Care pro Archive - DementiaHub.SG

Young-onset dementia refers to any type of dementia that develops in persons below the age of 65. Symptoms of dementia may present themselves differently in a younger person, as compared to dementia in older adults.

Source: Channel NewsAsia

It is a myth that dementia affects only older adults. Over 50 million people worldwide live with dementia in 2020, and this number is expected to increase to 82 million in 2030 and 152 million in 2050.1 Approximately 5% to 6% of the number is young-onset dementia, amounting to around 3.9 million people living with young-onset dementia as of 2021.2

In the past few years, the number of younger Singaporeans being diagnosed with dementia is increasing at an alarming rate. More than 100 individuals are diagnosed with young-onset dementia at the National Neuroscience Institute every year.3

Varied Symptoms in Young-onset Dementia

Not only do the symptoms manifest differently in younger persons, the condition has a greater impact on a younger person’s life, immediate family and the society as compared to older adults living with dementia.2,4

Some symptoms include:2,4
• Persons living with young-onset dementia are more likely to experience problems with their motor skills, including movement and coordination.
• Dementia affecting the frontotemporal brain regions are more common in younger persons, affecting planning and executive functions.

Impact of Dementia on Younger People

Compared with older adults, younger persons are at different life stages, and have different responsibilities, stages in relationships, and social activities. These make their experience of dementia uniquely different from older people. Some of these situations might include:2,4

• Younger persons are more likely to be in employment and possibly at higher points in their career with more responsibilities, upon the onset of dementia. The symptoms of their dementia may become apparent at work, causing them to lose their jobs. This can further result in loss of financial well-being for their families.
• A younger person is more likely to be a parent with younger children. Thus, they will face more challenges and lose parental responsibilities as they may gradually be unable to care for their younger children.

At the same time, most existing dementia care services and programmes in Singapore are designed for older adults and may not be suitable for younger persons, given the difference in experience. There are very limited services and programmes which are effective and age-appropriate for this group of individuals.5

George's Story

When George found out he had dementia, he was only 46 years old. As an ex-chemistry teacher, a published author of chemistry textbooks, and an active runner who always kept in good health, it was a shock to him, his wife and their three children. Learn more about the journey George and his family have undergone upon receiving his dementia diagnosis.

Watch how George’s family copes with his diagnosis:

Source: CNA Insider

If you or someone you know is experiencing symptoms of dementia, consult a family doctor or polyclinic doctor who can guide a person through the process of tests and diagnosis.

References

  1. Dementia statistics. (n.d.). Alzheimer’s Disease International. Retrieved 24 March, 2021, from https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/
  2. Hendriks, S., Peetoom, K., Bakker, C., van der Flier, W. M., Papma, J. M., Koopmans, R., Verhey, F., de Vugt, M., Köhler, S., Young-Onset Dementia Epidemiology Study Group, Withall, A., Parlevliet, J. L., Uysal-Bozkir, Ö., Gibson, R. C., Neita, S. M., Nielsen, T. R., Salem, L. C., Nyberg, J., Lopes, M. A., Dominguez, J. C., … Ruano, L. (2021). Global prevalence of young-onset dementia: A Systematic Review and Meta-analysis. JAMA Neurology, 78(9), 1080–1090. https://doi.org/10.1001/jamaneurol.2021.2161 
  3. Chiew, H. J. (2021, July 5). Young-onset dementia: Improving outcomes with early recognition at primary care.  SingHealth. https://www.singhealth.com.sg/news/defining-med/Young-Onset-Dementia 
  4. Alzheimer Society of Calgary. (n.d.). Young-onset dementia. Retrieved 5 March, 2020, from https://www.alzheimercalgary.ca/learn/types-of-dementia/young-onset-dementia
  5. Siew, W. J. W. (2021). Support programmes for people with young-onset dementia. Lee Kuan Yew Centre for Innovative Cities. https://lkycic.sutd.edu.sg/wp-content/uploads/sites/7/2021/10/LKYCIC-LLMAU-Webpost-Oct-2021-Support-Programmes-for-PYOD-Final.pdf   

Dementia can affect the entire brain. Learn how the brain works and understand how changes in specific brain regions can affect the ways dementia symptoms manifest.

Overview of the Brain

The brain can be divided into three main regions:

1. Cerebrum (contains the cerebral cortex and other deeper brain structures)
2. Cerebellum
3. Brain stem

The sections below provide simple explanations of how the brain works and the functions associated with the three brain regions. It also explains how changes to each brain region can affect the way a person functions in specific ways.

1. The Cerebrum and Its Associated Functions

Cerebral cortex: Contains the frontal lobes, parietal lobes, occipital lobes, and temporal lobes.

Frontal Lobes

• The outer layer of the brain located at the front of the head (closer to the face).
• The site of executive functions, including working memory, reasoning, judgment, decision-making, selective attention, and behavioural inhibition.
• Contains Broca’s area, which is involved in language production. Damage to this area can cause Broca’s aphasia, where a person cannot speak fluently.
• In frontotemporal dementia, the frontal and temporal regions of the brain shrink. The associated functions of these areas decline.

Parietal Lobes

• The outer layer of the brain located at the top of the head.
• This region processes and integrates sensory information (e.g. sight, space, awareness of the position and movement of body parts, touch, taste, smell, and temperature).
• Damage to this can cause issues in perceiving, visualising, and planning space and movement.

Occipital Lobes

• The outer layer of the brain located at the back of the head.
• This region receives and processes visual information from the eyes.
• It is involved in perceiving shape, colour, and movement.
• Damage to this lobe can cause issues with perceiving and recognising visual information.

Temporal Lobes

• The outer layer of the brain located closer to the bottom and sides of a person’s head, near the ears.
• The temporal region processes hearing, memory encoding, and emotions
• It is also a site for language processing, and the learning and recall of non-verbal information.
• A brain region called Wernicke’s area, which processes the meaning of language, is part of the temporal cortex.
• Damage to this area results in Wernicke’s aphasia, a condition where a person can speak fluently but whose speech and writing do not make sense, and has difficulties understanding others’ language.
• In frontotemporal dementia, the frontal and temporal regions of the brain shrink. The associated functions of these areas decline.

Deeper brain structures: Includes the hippocampus, hypothalamus, thalamus, basal ganglia, amygdala, and ventricles

Hippocampus

• Located just under the temporal cortex.
• It is needed for the formation of memories, especially for memories of life events.

Hypothalamus

• The hypothalamus is critical for the regulation of the body: for body temperature, hydration, eating, sleep-wake cycles, and other functions.
• Changes to the hypothalamus and its interactions with other parts of the brain and body can affect the body’s regulation systems.

Thalamus

• The thalamus is a brain region that receives, processes, and sends sensory information to the cerebral cortex.

Basal Ganglia

• Located next to the thalamus.
• The basal ganglia are involved in processing the control of movement, and the formation and recall of habits and skills.
• Damage to the basal ganglia happens in conditions such as Parkinson’s disease and Huntington’s disease. Persons with these conditions have impairments to their movement. While having either of these conditions, people can develop dementia.

Amygdala

• Located in front of the hippocampus.
• This region is important for emotional processing.

Ventricles

• The ventricles are spaces in the brain where the fluid in the human nervous system (cerebrospinal fluid) is found.
• Cerebrospinal fluid protects and nourishes the brain, provides an immune response (from pathogens like viruses), and removes waste products from the brain.
• A condition called hydrocephalus, where there is too much fluid in the ventricles, can cause dementia-like symptoms like memory problems, amongst other issues.

2. The Cerebellum and Its Associated Functions

The cerebellum is located below the cerebrum and next to the brain stem. It controls functions including movement, balance, and posture. This region is involved in some cognitive processes.

3. The Brain Stem and Its Associated Functions

The brain stem is located just above the spinal cord, and connects the rest of the brain above to the spinal cord.

It controls very basic and automatic functions, such as control of the heart rate, automatic responses, breathing, blood pressure, levels of consciousness, and some aspects of pleasure and pain processing.

Watch neurologist Tim Rittman explains how the brain works

Source: Alzheimer’s Research UK

The Brain Is A Complex Organ

The information above paints a simple picture of how the brain works. In reality, the brain is a very interconnected and complex organ. Brain functions require the activity of several areas.

Brain functions, especially the more complex ones, need other functions to work for themselves to work. This means that damage to one area can cause a domino effect on other functions.

As the brain sciences are a rapidly growing area, what we know about the brain and its effects on our health is changing by the day. Stay tuned to developments to find out how we can apply advances in the brain sciences to better the lives of persons living with dementia.

Knowing how dementia changes the brain, which affects dementia symptoms, helps us to understand why persons living with dementia behave the way they do.

The human brain is an organ of the nervous system that controls the body’s activities, processes information received by the body, and controls psychological functions such as cognition and emotion. Changes in the condition of brain regions can cause temporary or long-lasting impairment.

Some of the more common types of dementia are neurocognitive conditions such as Alzheimer’s dementia, vascular dementia, Lewy body dementia, and frontotemporal dementia.

Many of these symptoms associated with these neurocognitive conditions overlap. This is why people with different kinds of dementia have similar symptoms.

At the same time, each neurocognitive condition is caused by a different pattern of physical and chemical changes in the brain. This results in some differences in the pattern of symptom development, otherwise known as the condition’s “presentation” (how the person’s condition is “presented”).

How Changes In The Brain Affect Dementia Symptoms

While the presentation of dementia is largely dependent on the changes in the brain, the signs and symptoms are also influenced by environmental factors, such as a person’s physical environment (e.g. noise, temperature) and social environment (e.g. whether the person is made to feel included and respected).

How do brain changes affect the person?

Where the change happens in the brain

• Different areas in the brain are closely related to brain functions.
• Damage to an area can disrupt functions associated with this brain area.

Types of brain changes

• The way symptoms develop depends on the type of brain changes that happen, such as:

  • build-up of abnormal proteins
  • disruption of blood flow to the brain
  • too much cerebrospinal fluid in the brain’s ventricles
  • traumatic brain injury
  • abnormal signals in the brain

• Whether brain changes are temporary or long-lasting affects the person’s presentation of symptoms.

• Other health conditions a person experiences can also affect what happens in the brain, which can affect the person’s mental state.

For example, an infection can cause a person to experience delirium, which is an abrupt change in the brain which causes mental confusion.

Each person’s unique differences

• Each person has a unique body, brain, and history which shapes the way a condition develops in their brain.

The video below shows how Alzheimer’s disease, which is one kind of dementia, changes the brain.

Source: National Institute of Aging

Read on to learn more about how the brain works.

Although symptoms of dementia vary between individuals, there are some common warning signs.

Source: Agency for Integrated Care

“When you see a person living with dementia, you have seen just one.”

Every person living with dementia is unique and does not present the same symptoms. The needs and manifestations vary between individuals although there are some common symptoms.

Signs and symptoms of dementia include (but not limited to):

• Memory loss (forgetfulness) that occurs gradually, and worsens progressively with time. Immediate and short-term memory loss occurs first.
• Difficulty in communication.
• Problems recognising familiar faces, places, or items.
• Worsening of problem-solving abilities and increasing disorganisation.
• Problems with daily activities such as dressing and using utensils during mealtimes.

In addition, changes to moods and behaviours may also occur, such as:

• Depression
• Agitation
• Hallucinations
• Anxiety
• Paranoia
• Sleep problems

Christel & Her Grandparents

Christel shares how having been exposed to the condition with her grandfather taught her family to spot the signs in the case of her grandmother and take action.

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital and Dementia Singapore

If you or someone you know is experiencing symptoms of dementia, consult a family doctor or polyclinic doctor who can guide a person through the process of tests and diagnosis.

Downloadable Resources

The following resources contain bite-sized information on Signs & Symptoms that you may download and/ or print:

Click on the images below to download in English or select another language.

Living with Dementia: A Resource Kit for Caregivers (Book 1: Knowing Dementia)

Forget Us Not: Building a Dementia Friendly Community

References

  1. Alzheimer Society of Calgary. (n.d.). Young-Onset Dementia. Retrieved 5 March, 2020, fromhttps://www.alzheimercalgary.ca/learn/types-of-dementia/young-onset-dementia

Forgetfulness is not the only warning sign of dementia. Instead, it might be a result of normal ageing and not dementia. Learn how dementia is different from normal ageing.

As we age, some of us may get more forgetful and require a bit more time to recall things, or even struggle to multitask. It can get a little worrying that these might be early signs of dementia. However, these can be a result of normal ageing and not dementia.

The table below compares the 9 differences between signs of normal ageing and symptoms of dementia.

Age-related Changes

Dementia

Problems with memory

Occasionally forgetting names or appointments and events, but being able to remember them later. Sometimes, completely forgetting what others have mentioned.

May have trouble remembering people or important dates and events, and/or ask for the same information over and over again to the point that this can affect their daily activities (e.g., getting around and making purchases).

Misplacing items

Occasionally misplacing items, but being able to retrace steps to find them.

Losing items and being unable to retrace steps to find them. Placing things in unusual places (e.g., placing a mobile phone in the refrigerator), and/or accusing others of stealing. These behaviours might occur more frequently over time.

Problems with visual perception

Age-related vision changes, such as cataracts or glaucoma, can result in poor vision.

Becoming unable to recognise objects and faces due to changes in the brain. Difficulty in identifying patterns, colours, distances and spaces (e.g., perceiving glare on the floor as a pool of water).

Problems with walking & mobility

Due to age-related health reasons, such as muscle weakness and joint problems, may experience pain and stiffness when walking, or have reduced tolerance to walk long distances or climb the stairs.

Gradually losing the ability to walk safely due to reduced balance and awareness of the environment. May require more support to sit, stand and move over time.

Changes in mood, behaviour & personality

Getting tired of work, family and social activities sometimes, and feeling a little down or anxious. Occasionally becoming irritable when familiar routines or specific ways of doing things are disrupted.

Having rapid mood swings for no apparent reason, withdrawing from social activities, becoming passive, and sleeping more than usual. Becoming a little insensitive towards others.

Confusion with time & places

Occasionally getting confused about the day of the week but able to figure it out later. Sometimes, going to a spot in the house and forgetting the reason of going there, but able to remember the reason again.

Being unable to tell the time, or experiencing confusion about meal times (e.g., asking for lunch at night). Being unable to recognise their location, even their own home, which leads to feelings of frustration in unfamiliar or noisy environments. Getting lost in familiar places they often go to.

Difficulties in communication

Experiencing a bit of difficulty finding the right word sometimes. Needing to concentrate harder to keep up with a conversation, but sometimes losing track of the conversation if distracted or if multiple people speak at the same time.

Struggling to express themselves, and having trouble finding the right word or naming objects. Having problems understanding what others are saying, and sometimes stopping conversations without knowing how to continue.

Judgement & social behaviour

Making a bad decision once in a while.

Not knowing if it is safe or correct to do certain things (e.g., giving large amounts of money to strangers, or shouting and taking off clothes in public).

Difficulties in planning, thinking & completing familiar tasks

Being a bit slower to react to things or think things through, and becoming less able to multitask, especially when distracted. Occasionally making a mistake, e.g. when planning the monthly household budget.

Having difficulty planning and carrying out familiar and daily tasks (e.g., organising a grocery list, managing the monthly household budget and paying bills, or remembering the rules of a favourite game). Paying less attention to grooming or hygiene. Having trouble concentrating and following instructions, and because of this, taking a much longer time to do things.

Content in table is adapted from Alzheimer’s Association and Alzheimer’s Society.

DO NOT: Use the above list to self-diagnose or diagnose someone with dementia.

DO: If you or someone you know is experiencing symptoms of dementia, consult a family doctor or polyclinic doctor who can guide a person through the process of tests and diagnosis.

Downloadable Resources

The following resources contain bite-sized information that you may download and/ or print:

Click on the images below to download in English or select another language.

Forget Us Not: Building a Dementia Friendly Community

References

  1. Alzheimer Society of Calgary. (n.d.). Young-Onset Dementia. Retrieved 5 March, 2020, from https://www.alzheimercalgary.ca/learn/types-of-dementia/young-onset-dementia

Doll therapy is a psychosocial intervention that aims to meet psychological needs of persons living with dementia.

What is Doll Therapy?

Doll therapy is a non-pharmacological intervention that aims to reduce the behavioral and psychological symptoms of dementia (BPSD) that a person may experience.

It involves presenting the person living with dementia with a baby-like doll which has human-like features such as facial expressions, sound, and texture during therapy.1

Doll therapy is more than merely offering a doll to a person living with dementia. It requires:
• Validating the feelings of the person living with dementia.2
• Engaging with the doll by carrying, communicating and caring for it.

Benefits of Doll Therapy

Doll therapy has shown to increase the well-being of the person living with dementia by calming them, reducing their feelings of loneliness, and giving them a sense of purpose.3

Doll therapy can be implemented with the aim of meeting the psychological needs of persons living with dementia, which include attachment, comfort, occupation, identity, and inclusion.

The use of doll therapy as a non-pharmacological intervention has become increasingly popular. Psychosocial interventions, which are non-pharmacological interventions, may sometimes be used first before or in conjunction with pharmacological interventions, as medications can generate side effects such as increased drowsiness and increased fall risk.4

Whom is Doll Therapy for?

Doll therapy is most likely to benefit:

• Both men and women.
• People living with moderate to severe stages of dementia who would perceive the doll as a baby.5
• People who are experiencing an early stage of dementia who may enjoy holding or dressing the doll.
• People living with dementia who have strong memories of parenthood, who may be having delusions or hallucinations about their children crying, or who might frequently be looking for their infant children.
• People living with dementia who have formerly enjoyed being around children or babies.

Past Studies on Doll Therapy

Study 1

A small study by Alander, Prescott and James (2015)6 supports the claim that doll therapy reduces behavioural challenges in people with living dementia. All 16 study participants (persons living with dementia) from 3 residential homes appeared calmer than before the doll therapy sessions. It was found that the dolls provided meaningful engagement as the study participants were kept occupied purposefully. The dolls also offered companionship, which resulted in the participants feeling more connected, more included, and less lonely. Caring for the dolls was also found to uphold their self-identities of their roles as parents.

Study 2

A “Baby Doll Therapy” project by Braden and Gaspar (2015)7 in which doll therapy guidelines were used with doll therapy sessions showed positive behavioural improvements as 27% of the people living with dementia in the dementia care centre where the study was conducted were happier, less anxious, more energetic and easier to work with because they found meaning in the therapy.

Study 3

Another small study done by Pezzati, et.al (2014)2 involved 10 persons living with dementia who were residents at a nursing home. The study found that through the process of caring for these dolls, the participants’ well-being improved as their attachment needs were met through the relational bond developed between participant and doll.

Concerns About Doll Therapy

Concerns About Deception

A level of deception may be involved when dolls are used, as persons living with dementia often believe that the dolls used are real infants. Caregivers and care professionals may need to play along with this belief to facilitate the interaction between the person and the doll.

On one hand, it has been argued that acting as if the doll is a real human infant is an example of malignant social psychology, which takes away personhood from the person living with dementia.8 This is because the acting, which can qualify as deception, violates a person’s right to autonomy, and by extension, their right to dignity and respect.

A point of view that addresses the previous point’s concern is that the deception used in doll therapy is ethical as it is used with the intention to better the wellbeing of persons living with dementia on two counts. Firstly, it reduces the negative behavioural and psychological symptoms of dementia that they experience, such as agitation or a depressive mood. Secondly, it can meet psychological needs such as attachment and occupation, while raising the mood and engagement of the person.

Another way of understanding the situation is to know that the person living with dementia is by themselves coming to a belief that the doll is a human being. Trying to convince them that their belief is false may actually be counterproductive, as it may not be possible to orient them to reality that the doll is not a human infant, and may instead confuse and agitate them.4 The only other viable way forward would be to play along with the person’s belief while encouraging their therapeutic outcomes to be met.

Concerns About Infantalisation

Some have suggested that under doll therapy, persons living with dementia are treated like children6, contributing to their perception that doll therapy is demeaning, patronising and infantilising.4

Playing with dolls is often associated with children’s activities and behaviour, as some children may believe that the dolls they are playing with are real infants, while others may play with dolls as part of a role-playing/make-believe activity. This association with childlikeness may make doll therapy be seen as something inappropriate for adults. Some may feel that if adults who have dementia did not have their condition, they themselves might not choose to interact with dolls.

This is a dilemma that some family members may face when thinking about their loved ones participating in doll therapy.9

A way of addressing this concern about doll therapy is to consider that the person living with dementia does have dementia, and is different from how they were before dementia, even though they are adults.

The section above addressing the concern about deception also applies here: doll therapy reduces the negative symptoms of dementia that may be experienced, and can also meet psychological needs such as attachment and occupation, while raising the mood and engagement of the person.

Concerns About Attachment

There are concerns that persons living with dementia may encounter distress if they fear losing a doll they have interacted with, or if the dolls are taken away from them after the therapy session.

In addition, family members may express concern that doll therapy is used as a substitute for human company during resource constraints.6

One way to think about this dilemma is that even under resource constraints, persons living with dementia can still have their wellbeing improved by doll therapy.

Guidelines for Effective Doll Therapy

Staff are encouraged to be educated on the therapeutic objective and protocol of doll therapy to avoid undermining dignity of the people living with dementia.6,9

These are some proposed guidelines for effective doll therapy, adapted from Alzheimer’s Australia:9

  • Prior to Using the Doll

    • Consider the resident’s background and history. This includes traumatic events experienced such as miscarriage or abuse which may prevent acceptance of doll therapy.

    • Doll therapy should be offered as a choice instead of a stand-alone strategy because it may be unsuitable for some.2,6

    • The type of dolls used should suit the personality and culture of the person living with dementia. For example, avoid using dolls which can cry as they can cause distress, and avoid those with permanently closed eyes as they may be mistaken as being dead.

    • Differentiate the dolls with different clothes to avoid confusion over ownership matters.

    • Explain to family the therapeutic goals and process as well as obtain family members’ approval to address infantilization concerns.4

    • For hygiene purposes, wash hands before and after handling the doll to avoid getting the doll dirty and to reduce infection risk.

  • Introducing the Doll

    • Greet the person living with dementia while cradling the doll and then sit down next to them.

    • Do not force the person living with dementia to hold the doll, but wait for them to acknowledge its existence. Invite the person to hold the doll if they show interest.5

    • Observe their response to the doll, such as a smile or loving tone to the doll, to assess if they will enjoy interacting with the doll.

    • Bring the doll to the person’s attention if they do not seem to notice the doll, and invite their feedback. If the person appears interested and engaged, ask if they would like to hold it. However, if the person is still disinterested, consider reintroducing the therapy on another occasion.

    • Put the dolls in prominent and accessible places for the person to exercise their choice when they show interest. Do not assume that the person living with dementia knows whether the doll is real but wait for signs they show.

    • Observe whether the person living with dementia appears to be viewing the doll as a real baby. Engage the person by making general comments about the doll, commenting on its eyes/hair/clothes while taking care not to identify it as either a doll or baby at this stage.

    • If the person recognizes the doll as a doll, do not deny it but instead, use it as an alternative form of reminiscence and proceed to explore how lifelike the doll is.

  • Therapy Session

    • During the session, the person living with dementia may name the doll. This should be recorded in the resident’s care plan. Address each respective doll by the same name because of its relational value to the person living with dementia.

    • Follow his stream of thoughts as the conversation prompts during the session and try to put some structure to the conversation such as talking about their own children when they were babies.

    • Respect his perception of the doll. If he is responding positively and perceiving it as a real baby, avoid referring to it as a doll and ensure it is handled like a real child such as avoiding picking it up by the leg or head.

    • Monitor the person’s response and engagement throughout the session to assess if doll therapy is appropriate.
    Record these responses in the care plan.

    • Thank the person living with dementia for their time and care upon completion of the session. Inform the person that the doll will be taken back to its crib or home to ensure its safety.

    • Update the care plan with information such as therapy session goal, time and duration, responses of the people living with dementia when introducing, playing with and withdrawing the doll as well as their behaviour and mood after the session can help monitor any fatigue from the doll therapy and better facilitate handover of caregivers in different shifts.9

Conclusion

Doll therapy can help to manage behavioural and psychological symptoms of dementia (BPSD) if implemented well. It meets some psychological needs of people living with dementia, which include attachment, comfort, occupation, identity, and inclusion.

At the same time, the practice of doll therapy may pose ethical questions that caregivers and care professionals may want to be aware of and think through. Concerns including infantilisation may make doll therapy an intervention which caregivers and care professionals are hesitant to use.

To address these valid concerns, guidelines in doll therapy are needed. These guidelines offer guidance on doll types, how the dolls should be handled, addressed, and kept. They also offer guidance on larger, more systemic factors such as staff education, obtaining consent of family members and the use of a detailed care plan.

Read on to find out about other ways the wellbeing of persons living with dementia can be improved.

References

  1. Cantarella, A., Borella, E., Faggian, S., Navuzzi, A., & De Beni, R. (2018). Using dolls for therapeutic purposes: A study on nursing home residents with severe dementia. International journal of geriatric psychiatry, 33(7), 915-925. DOI: http://10.1002/gps.4872
  2. Pezzati, R., Molteni, V., Bani, M., Settanta, C., Di Maggio, M. G., Villa, I., Poletti, B., & Ardito, R. B. (2014). Can Doll therapy preserve or promote attachment in people with cognitive, behavioral, and emotional problems? A pilot study in institutionalized patients with dementia. Frontiers in psychology5, 342. DOI: http://10.3389/fpsyg.2014.00342 
  3. Mitchell, G. (2014). Use of doll therapy for people with dementia: an overview. Nursing older people, 26(4).
  4. Mitchell, G., & Templeton, M. (2014). Ethical considerations of doll therapy for people with dementia. Nursing ethics, 21(6), 720-730. DOI: http://10.1177/0969733013518447
  5. Bisiani, L., & Angus, J. (2013). Doll therapy: a therapeutic means to meet past attachment needs and diminish behaviours of concern in a person living with dementia–a case study approach. Dementia (London, England)12(4), 447–462. https://doi.org/10.1177/1471301211431362
  6. Alander, H., Prescott, T., & James, I. A. (2015). Older adults’ views and experiences of doll therapy in residential care homes. Dementia, 14(5), 574-588. DOI: http://10.1177/1471301213503643
  7. Braden, B. A., & Gaspar, P. M. (2015). Implementation of a baby doll therapy protocol for people with dementia: Innovative practice. Dementia, 14(5), 696-706. DOI: http://10.1177/1471301214561532
  8. Kitwood, T. M. (1997). Dementia reconsidered: The person comes first (Vol. 20, pp. 7-8). Buckingham: Open University Press.
  9. Alzheimer’s Australia WA (2018). Guidelines for Use of Dolls and Mechanized Pets as a Therapeutic Tool. Retrieved from https://www.dementia.org.au/files/WA/documents/2.00%20Guidlines%20for%20Use%20of%20Dolls%20and%20Mechanized%20Pets%20as%20a%20Therapeutic%20Tool.pdf

The CAUSEd problem-solving tool is designed to encourage caregivers and care professionals to understand the behaviours of persons living with dementia as a form of communication with their social and physical environments. In turn, caregivers and care professionals can identify the possible triggers for the behaviours, and minimize the impact of behaviours by developing and implementing support strategies.

What Is CAUSEd?

CAUSEd is a problem-solving tool developed by Dementia Australia, to enable caregivers and care professionals to understand the changes in behaviour of persons living with dementia. Using an easy-to-remember acronym, CAUSEd (see list below for elaboration) guides users to see behaviour changes as responses to changes in the brain, and consider various factors that can be addressed in response to the behaviour.

Communication
Activity
Unwell/Unmet needs
Story
Environment
dementia

The tool provides a systematic approach to:
• Identify the modifiable triggers for behaviour changes.
• Understand the unmet needs that persons living with dementia are communicating through their behaviours.
• Develop and implement support strategies to respond and meet the needs communicated, and minimize the impact of the behaviours.

Why Use CAUSEd?

As dementia progresses, it may become increasingly difficult for persons living with dementia to recognize and express their needs.

More often than not, the triggers for behavioural changes are often external to persons living with dementia, rather than an inevitable consequence of their dementia progression. These external triggers include problems in the social and physical environments that can be addressed and changed.

Despite limited evidence on effectiveness and significant evidence for potential adverse effects in older adults3, pharmacological treatments are often used.2 However, best-practice guidelines internationally recommend non-pharmacological approaches as first-line treatments for behaviours and symptoms related to dementia (BPSD).4,5

The CAUSEd problem-solving tool is a non-pharmacological approach that guides you to see beyond the behaviours and think about the causes in the following six aspects.6 The corresponding guiding questions also reflect that most of the triggers for the person’s behaviours can be addressed and modified using non-pharmacological strategies. Communication, Activity, Unwell/ Unmet Needs, Story, and Environment are factors that can be addressed or modified. While the dementia (with a lowercase d) cannot change, we can attempt to understand the person’s behaviour based on the dementia-related brain changes.

Putting CAUSEd into Practice: An Example

Madam Tan is a 78-year-old woman living with dementia, who has been recently admitted to the ward of the nursing home that you are working in. She uses a wheelchair and requires minimum to moderate assistance in her activities of daily living (ADLs).

On Madam Tan’s first morning at the home, you and your colleague have been assigned with the responsibility to assist Madam Tan in her showering. However, upon entering the bathroom, Madam Tan refused both of you to assist with her showering (behaviour: resistance to care). When you and your colleague attempted to continue with her care, she became increasingly agitated and eventually burst into tears (behaviour: emotional lability). She also began to push both of you away (behaviour: aggression) and thus immediately stopped with her care.

Using the CAUSEd approach to problem solve why Madam Tan was becoming distressed and not responding well to support with showering, here are some plausible areas of concern that may have triggered Madam Tan’s behaviour changes:

Communication: Madam Tan usually wears a hearing aid and glasses, and was having difficulty hearing and understanding what was being asked of her.
Activity: Madam Tan usually showers at night before going to bed, because this helps her to sleep better.
Environment: Madam Tan is unfamiliar with the new environment (nursing home) and has never met you and your colleague before today, which caused her to feel very anxious.

 

After identifying the triggers using the CAUSEd approach, you can introduce helpful strategies to support a more positive experience for Madam Tan during showering. These strategies include:

• Ensuring Madam Tan is wearing her hearing aid and glasses before communicating with her.
• Changing the time of her shower to the evenings.
• Inviting Madam Tan to the shower and offering some choice. E.g., “Would you like to have your shower at 7pm or 8pm?”.
• Providing visual cues such as asking Madam Tan to hold her toiletries.
• Ensuring Madam Tan has an opportunity to develop rapport with you and your colleague before her shower. E.g., participate together in activities that Madam Tan enjoys, have meals together with her, and frequently make small talk with her.
• Providing support at an appropriate pace for Madam Tan.

Learn More About The Application of CAUSEd

If you would like to learn more about the CAUSEd problem-solving tool, you can go online, or attend the Foundations of Person-Centred Dementia Care course by Dementia Singapore, which provides more information on Behavioural Communication.

This course offered by Dementia Singapore is intended for front-line care staff and volunteers who would like to be equipped with a basic understanding of how to care for people living with dementia in a variety of settings. These settings include the family home, centre-based services, and residential care facilities.

Acknowledgment

Many thanks to Dementia Australia for granting the permission to adapt and reproduce this article on the CAUSEd problem-solving tool. The tool is developed by Alzheimer’s Australia Vic educators, Di Fitzgerald and Marina Cavill.

References

  1. O’Toole, G. (2017). CAUSEd: Effective problem solving to support well-being. Australian Journal of Dementia Care, 6(1), 15-16.
  2. Guideline Adaptation Committee, Clinical Practice. (2016). Clinical Practice Guidelines for Dementia in Australia: A step towards improving uptake of research findings in health- and aged-care settings. Australasian Journal on Ageing, 35(2), 86–89. doi: 10.1111/ajag.12330.
  3. Jessop, T., Harrison, F., Cations, M., Draper, B., Chenoweth, L., Hilmer, S., Westbury, J., Low, L. F., Heffernan, M., Sachdev, P., Close, J., Blennerhassett, J., Marinkovich, M., Shell, A., & Brodaty, H. (2017). Halting Antipsychotic Use in Long-Term care (HALT): A single-arm longitudinal study aiming to reduce inappropriate antipsychotic use in long-term care residents with behavioral and psychological symptoms of dementia. International Psychogeriatrics, 29(08), 1391–1403. doi: 10.1017/s1041610217000084
  4. Ministry of Health. (2013). MOH clinical practice guidelines on dementia. https://www.moh.gov.sg/docs/librariesprovider4/guidelines/dementia-10-jul-2013—booklet.pdf
  5. NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People. (2016). Clinical practice guidelines and principles of care for people with dementia: Recommednations. https://cdpc.sydney.edu.au/wp-content/uploads/2019/06/Dementia-Guideline-Recommendations-WEB-version.pdf
  6. Alzheimer’s Australia Vic. (2015). Annual report: The power of partnerships. https://www.dementia.org.au/sites/default/files/VIC/documents/AAV-2014-15-Annual-Report-FULL-FINANCIALS.pdf

Caregivers of persons living with dementia face unique challenges. Dementia progression can take several years and the caregiving needs vary as their loved ones transit through the stages of dementia. The good news is, no one caregiver is alone. There are several initiatives in Singapore to help support caregivers, specifically those caring for loved ones living with dementia. Read on to learn more about them!

Caregiver Support Groups

Caregiver Support Groups (CSGs) offer a private and safe environment for caregivers to share their thoughts, challenges and learnings with one another as they go through similar experiences. Such insights allow caregivers to share their knowledge through practical caregiving and self-care tips.

CSGs also help caregivers understand that they are not alone in their caregiving journey allowing the group to emotionally support each other.

Finding A Caregiver Support Group

Caregiver Support Groups exist in hospitals, in the community, and even online. One can speak to a social worker or ask fellow caregivers to learn more about support groups for caregivers and loved ones living with dementia.

The following is a comprehensive list of support groups one can explore:

In Hospitals & Specialist Centres

Khoo Teck Puat Hospital (KTPH)

Dementia Support Group sessions at KTPH are free and open to all. The group meets on the last Saturday of odd months, from 1pm to 3pm.

Tel.: 6555 8000
Email: ktph.memorycare@alexandrahealth.com.sg


National Neuroscience Institute (NNI)

Dementia Support Group sessions at NNI are organised by CARe (Cognitive Assessment & Rehabilitation) team. It is intended for NNI patients living with young-onset or atypical dementia and their caregivers. The sessions are conducted on Wednesday mornings and Thursday afternoons.

Tel.: 9656 8078
Email: mei_mei_nyu@nni.com.sg

In The Community

Dementia Singapore (DSG)

Caregiver Support Groups run by DSG are available in English, Mandarin and Malay. English groups are conducted at various locations on weekdays and Saturdays, while Mandarin groups are also available on Saturdays. Support Groups are strictly for family caregivers looking after for persons living with dementia.

Tel.: 6377 0700
Email any enquiry here.
Register directly online.


Caregivers Alliance Limited (CAL)

Support Groups are available to graduates of the caregivers-to-caregivers training programme.

Tel.: 6460 4400


Caregiving Welfare Association (CWA)

Support Groups at CWA are open to all family caregivers, and are conducted two times a month, around specific themes.

Tel.: 6466 7957 / 6466 7996/ 6734 2991
Email: contact@cwa.org.sg


Club Heal

Support Groups at Club Heal are offered on the first Fridays of the month at the three Mental Wellness Centres located in different areas.

Tel.: 6899 3463
Email to register: info@clubheal.org.sg


Filos Community Services

Organises Caregivers’ Cove Conversations where caregivers come together to share and learn common dementia related concerns.

Online Support Groups

Many private community groups are active on social media sites like Facebook.

These groups can take the form of:

• Online support groups wherein caregivers interact with fellow caregivers (e.g., Dementia-Friendly Singapore Facebook, TOUCH Caregivers Support Facebook)
• Interest groups in which caregivers and the interested public join to acquire relevant information
• Community Networking Projects (e.g., Project We Forgot Community Network)

Caregiver Support Network

The Caregiver Support Network (CSN) was formed as part of efforts under the Dementia-Friendly Singapore (DFSG) initiative to support and connect with caregivers taking care of persons living with dementia, and to address mental health or physical health conditions amongst caregivers. The goal of CSN is to empower caregivers through Peer Support Network focusing on self-care, mindset change and recognition.

The table below lists the Caregiver Support Networks offered by different service providers across Singapore. To make an enquiry about a CSN in a particular region, please call them at their corresponding contact numbers included in the table. To find out more about CSNs, you may contact Agency for Integrated Care at ccmh@aic.sg.

dementiahub
Central Region

MacPherson: Brahm Centre Ltd. (Tel.: 6741 1131)

Toa Payoh East: Care Corner (Tel.: 6258 6601)

Teck Ghee: AMKFSC Community Services Ltd. (Tel.: 9116 4790)

Yio Chu Kang: AWWA Ltd. (Tel.: 9621 7856)

East Region

Bedok: GoodLife! @ Bedok by Montfort Care (Tel.: 6312 3988)

North Region

Nee Soon South: Goodlife! @ Yishun by Montfort Care (Tel.: 6484 8040)

Woodlands: AWWA CREST Silver Station (Tel.: 9784 9247)

South Region

Queenstown: Fei Yue Community Services (Tel.: 6471 0012)

West Region

Hong Kah North: REACH Community Services (Tel.: 6801 0878 / 6801 0876)

Taman Jurong: NTUC Health (Tel.: 8223 1135)

Islandwide

Dementia Singapore Ltd (Tel.: 6377 0700)

Learn more about Dementia Singapore’s Caregiver Support Network offering: Interest-based Activities for Caregivers.

Other Forms of Caregiver Support

Dementia Helpline

Dementia Singapore also provides helpline counselling services for caregivers looking after persons living with dementia. Be assured that all information is kept strictly private and confidential.

If you are caring for a loved one with dementia and require help or assistance on what is suitable for you, call the Dementia Helpline at 6377 0700 or send an online enquiry.

The Dementia Helpline is open:
Mon to Fri: 9am to 6pm
Sat: 9am to 1pm
(Closed on Sundays & public holidays)

Additional Resources

Caregiver Support Network Toolkit
Caregiver Support Network Toolkit

Designed by the Agency for Integrated Care, this toolkit offers a step-by-step guide to empower individuals in setting up a Caregiver Support Network that emphasises self-care, peer support and recognising caregivers’ well-being in the community.

What is in a Day of a Person Living With Dementia?

Step into the shoes of persons living with dementia using the Virtual Reality (VR) application Experience Dementia in Singapore (EDIS).

Dementia is a degenerative condition where symptoms worsen over time. By creating an enabling environment and adopting a person-centred approach in managing the condition, the lived experience of a person living with dementia can be greatly improved.

EDIS presents the following scenarios to illustrate the challenges of a person living with dementia, and suggests how you, families, and communities can support their enablement.

In a HDB Home

Experience the world through the eyes of Auntie Lucy, a person living with dementia and find out what her anxieties and frustrations are at home. While understanding her perspective, find out how the living environment and a supportive relationship helps in enabling her to be independent.

At the Day Care Centre

Aunty Alice feels bored and restless at a dementia day care centre. She finds herself often being ignored, and feels that the activities offered are not to her preference. Learn how a care professional can use a person-centred care approach to enable a person living with dementia to feel respected and have an increased sense of belonging.

Heading to the Supermarket

It can be a daunting experience for a person living with dementia to navigate an MRT station that has multiple exits. Journey with Uncle James as he tries to find his way out of a station and complete his grocery shopping at a supermarket.

To enjoy a smooth experience, you are advised to:
• Reduce the number of applications running in the background of your device; and
• Ensure you are using the latest version of your browser with a good internet connection of at least 1 Mbps.

Register here to access the EDIS 360 web application. The link to the application’s VR scenarios will be made available upon completion and submission of the registration form.

Learn how a home can be modified to create a dementia-friendly environment that is more accessible, comfortable, and safe for persons living with dementia.

This VR application was developed by Dementia Singapore, supported by The Majurity Trust, Agency for Integrated Care and Singapore Institute of Technology (SIT).

Persons living with dementia may face challenges navigating the physical environment, due to loss of orientation, sensory acuity, visual-spatial awareness, and mobility.  Changes in their sensory system may reduce their tolerance towards environmental stimuli, such as sound levels, lighting, activity and people. For some persons living with dementia, the lack of sensory stimulation and occupational deprivation results in ill-being, leading to loss of self-worth and self-identity.

Experience Dementia in Singapore is a Virtual Reality (VR) application which provides you with the perspective of a person living with dementia. Step into the shoes of the person living with dementia to experience the challenges faced in a typical apartment in Singapore, and consider how we can modify the environment to support the well-being of the person living with dementia at home.

A dementia-friendly home aims to enable persons living with dementia to maintain their independence in performing everyday activities such as eating, going to the toilet, bathing, and continuing their hobbies in a meaningful way. Where possible the person living with dementia should be supported to engage in activities outdoors.

List of Resources for the Homes of Persons Living with Dementia

Local Resources

360° Virtual Reality Dementia-Friendly HDB Home Design Guide

The 360° Virtual Reality Dementia-Friendly HDB Home Design Guide is a resource developed by Agency for Integrated Care and Dementia Singapore, for persons living with dementia and their families, and care professionals in Singapore. It provides a range of proposed modifications to create a dementia-friendly home that is more accessible, comfortable and safer for persons living with dementia.

For the best viewing and user experience on this virtual reality guide, it is recommended to access it using a desktop.


HACK CARE

HACK CARE by LIEN Foundation is a catalogue of more than 240 pages of ideas to make a home a friendlier environment for persons living with dementia and their families. It assembles practical hacks, surprising ideas, and simple tips and tricks to simplify a caregiver’s life as they cope with the daily challenges of caregiving, while transforming them into meaningful and enriching moments.

Overseas Resources

Making Your Home Dementia-Friendly

The Alzheimer’s Society in the United Kingdom has developed a booklet which describes some of the ways to create a more dementia-inclusive home, to support persons living with dementia and their families.

The booklet comprises multiple sections, where each section covers a different aspect of living at home. Some of the tips offered by this booklet, may require help and support from care professionals as well. The sections include:

• Lighting
• Furniture and furnishings
• Flooring
• Eating and drinking
• Using the bathroom
• Knowing where things are
• Keeping things in order
• Keeping safe

The booklet contains a checklist that recommends some changes individuals can implement to make their homes more dementia-inclusive.


Safety In and Around the Home

This resource by Dementia Australia contains tips on how friends, family, and caregivers of persons living with dementia, can improve the safety of the physical environment in and around the home.

The page comprises a simple safety checklist for individuals to assess their homes for any safety hazards.


Guidelines on Dementia-Friendly Environments

These resources by the Social Care Institute for Excellence in the United Kingdom, contain information on how the physical environments of various aspects in and around a home can be designed to be more dementia-inclusive, such as:

• Kitchen and dining areas
• Bedrooms
• Toilets and bathrooms
• Gardens
• Lighting
• Assistive technology
• Noise levels

There is no single cause of dementia. Rather, a combination of multiple factors is associated with the development of dementia. Family history and lifestyle factors, such as exercise patterns, dietary habits, and stress levels, are examples of risk factors that may contribute to the onset of dementia.

Risk factors are characteristics which increase the likelihood of developing a disease. Their presence does not guarantee the development of the disease in question. For example, not everyone who smokes develops heart disease and not everyone with heart disease has been a smoker. However, a person who smokes is more likely to develop heart disease.

Some risk factors can be modified. For example, being physically active reduces the risk of developing dementia. Other risk factors cannot be modified, however. Non-modifiable risk factors include age, genetics, gender, and ethnicity.

dementia-hub-sg

Some content is reproduced with permission from Alzheimer’s Disease International’s article on Risk Factors and Risk Reduction.

References

  1. Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. N., Ogunniyi, A., Ortega, V., Ritchie, K., Rockwood, K., Sampson, E. L., Samus, Q., Schneider, L. S., Selbæk, G., Teri, L., Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet Commissions, 396(10248), 413-446. https://doi.org/10.1016/S0140-6736(20)30367-6

Here are four common non-modifiable risk factors of disease that have been associated to the development of dementia:

Age

The greatest risk factor for dementia is age. Although age increases risk, dementia is not a normal part of ageing, and ageing is not itself a cause of dementia.

dementia-hub-sg

Genetics

Watch Dr Joshua Kua, a Geriatric Psychiatrist, answer whether dementia runs in the family:

Source: Agency for Integrated Care

dementia-hub-sg

There are more than 20 genes which affect a person’s risk of developing dementia. The gene APOE was the first known to increase a person’s risk of developing Alzheimer’s disease, which is the most common cause of dementia, and it is currently still the strongest risk gene known. There are also genes which directly cause dementia, but these deterministic genes (genes that guarantee the development of a condition) are rare – they are estimated to account for less than 1% of dementia cases, and cause young-onset forms in which symptoms usually develop before the age of 60.

Gender

Women are more likely to develop Alzheimer’s disease than men, even when the fact that women’s lifespans are on average longer than men’s is accounted for. The reasons for this are unclear.

dementia-hub-sg

Ethnicity

In a 2008 study investigating the prevalence of dementia in Singapore, Malays were found to have twice the risk of developing Alzheimer’s Disease than Chinese, while Indians had more than twice the risk of developing Alzheimer’s Disease and Vascular Dementia than Chinese. The reasons for this ethnic difference require further investigation.1

dementia-hub-sg

Some content is reproduced with permission from Alzheimer’s Disease International’s article on Risk Factors and Risk Reduction.

References

  1. Sahadevan, S., Saw, S. M., Gao, W., Tan, L. C., Chin, J. J., Hong, C. Y., & Venketasubramanian, N. (2008). Ethnic differences in Singapore’s dementia prevalence: The stroke, Parkinson’s disease, epilepsy, and dementia in Singapore study. Journal of the American Geriatrics Society, 56(11), 2061-2068. doi: 10.1111/j.1532-5415.2008.01992.x.

Although factors such as genes, gender, race, and age are not within control, there are things that can be done to reduce the risk of developing dementia.

Individuals can make lifestyle changes to reduce their risks of developing dementia, and systemic societal changes can be made to reduce the incidence of dementia in a community.

There is growing research evidence that supports the link between 12 factors, which are written about later in this article, and the risk of developing dementia. Though these risk factors are not direct causes of dementia, addressing all of them may potentially prevent or delay up to 40% of potential cases of the development of dementia cases.

dementia

Many of these 12 risk factors are also linked to other health conditions, such as cardiovascular diseases, cancer, diabetes and chronic respiratory diseases, some of which, such as cardiovascular diseases, are themselves risk factors for dementia. Modifying the relevant health behaviours that prevent these health conditions may thus reduce the risk of many health issues simultaneously, leading to both better overall wellbeing and a reduced risk of developing dementia.

12 Modifiable Risk Factors of Dementia

Physical Inactivity

Regular physical activity is one of the best ways to reduce the risk of dementia. It is good for the heart, blood circulation, weight management and overall mental wellbeing. It can also help to lower cholesterol levels and maintain blood pressure at a healthy level, decreasing the risk of developing vascular dementia.

A year-long study by researchers at the University of Pittsburgh, involving 120 people aged between 60 and 80, found that walking briskly for 30 to 40 minutes a day three times a week was sufficient for re-growing the structures of the brain linked with cognitive decline in later life. Scans later revealed that the parts of the brain that shrink with age actually grew in volume after moderate but regular exercise.1

It is recommended that adults aim for either 150 minutes of moderate aerobic activity or 75 minutes of vigorous aerobic activity each week, in order to maintain an activity level that raises the heart rate. This means simply brisk-walking for 30 minutes a day, five times a week, or jogging for 25 minutes a day, three times a week.

Though these are prescribed levels of physical activity for the general population, it is best if people pay attention to their own physical condition, which they know best. In addition, what matters is that they simply start trying. Every small step counts!

Smoking

Smoking greatly increases the risk of developing dementia in addition to creating complications for the lungs and heart, while increasing the risk of other conditions, including type 2 diabetes, stroke, lung cancer, and other cancers.

The World Health Organization (WHO) and Alzheimer’s Disease International (ADI) found a correlation between smoking and the risk of dementia: smokers have a 45% higher risk of developing dementia than non-smokers.2 WHO’s recently released guidelines for dementia risk reduction in 2019 listed tobacco dependence as the leading cause of preventable death globally, and associated it with other disorders and age-related conditions such as frailty and work ability in order people.3

These pieces of research and guidelines made based on evidence highlight the importance of not smoking for lowering the risk of dementia and cognitive decline. It is also better late than never when it comes to stopping the smoking habit, as stopping later in life also reduces the risk of dementia.

Excessive Alcohol Consumption

An excessive consumption of alcohol of more than 21 units per week significantly increases the risk of developing dementia, in addition to it being a causal factor in more than 200 disease and injury conditions, a range of mental and behavioural disorders, and other noncommunicable diseases.

Consuming moderate amounts of alcohol is recommended for reducing the above risks, and for maintaining overall wellbeing.

Air Pollution

A growing amount of research evidence suggests that air pollution increases the risk of developing dementia. It is recommended for policymakers to expedite improvements in air quality, particularly in areas with high air pollution.

Head Injury

Head injuries increase the risk of developing dementia. They are most commonly caused by car, motorcycle, and bicycle accidents; military exposures; boxing, football, hockey and other sports; firearms and violent assaults; and falls. Policymakers could use public health and other policy measures to reduce head injuries. In addition, individuals can exercise a reasonable level of precaution when participating in activities, such as wearing helmets during some sports activities, and observing workplace safety measures.

Infrequent Social Contact

Of all the ways to reduce the risk of dementia, engaging in frequent social activity may be the most enjoyable. It is well established that social interaction may delay the onset of dementia.

Though the research literature on which specific types of social activity reduce dementia risk is still developing, some theories suggest that social engagement may benefit brain health via brain stimulation, staving off dementia and depression in the process.

A study published in the American Journal of Public Health showed that women with larger social networks were 26% less likely to develop dementia than those with smaller social networks. In addition, women who had daily contact with friends and family cut their risk of developing dementia by almost half.4

The potential benefits of social contact on cutting dementia risk adds more reason to common experience of how social activity enriches lives. Some ways of engaging in activity include: joining a club or neighbourhood social activity, meeting friends for a meal, or volunteering.

The potential benefits of social contact on cutting dementia risk adds more reason to common experience of how social activity enriches lives. Some ways of engaging in activity include: joining a club or neighbourhood social activity, meeting friends for a meal, or volunteering.

Lower Levels of Educational Attainment

A low level of educational attainment in early life is one of the most significant risk factors for dementia. It is recommended that policy prioritises childhood education for all.

Mid-Life Obesity

Obesity is associated with an increased risk of dementia, especially in mid-life. It is also associated with other non-communicable diseases, and can generally be addressed through lifestyle changes such as diet and exercise.

Hypertension (High Blood Pressure)

Hypertension (high blood pressure) in mid-life increases a person’s risk of dementia, amongst other health problems. To reduce this risk, monitoring and keeping blood pressure at a healthy range is advised. This healthy blood pressure range can be worked towards and maintained through lifestyle changes, such as through exercise, a balanced diet, and stress management, and if necessary, medication for hypertension if prescribed by medical professionals.

Diabetes

Type 2 diabetes is a risk factor for the future development of dementia. Persons who have type 2 diabetes are advised to monitor their blood glucose level, and to manage it with dietary measures, regular exercise, other lifestyle measures, and medication, should this be prescribed by a doctor.

Depression, Loneliness and Social Isolation

Depression is associated with dementia incidence. It is currently not clear whether and to what extent dementia may be caused by depression or vice versa.

In any case, it is important to manage and treat depression because it is associated with increased disability, physical illnesses and other negative outcomes which themselves may complicate care for a person with dementia.

Hearing Impairment

People with hearing loss have a significantly increased risk of dementia, though using hearing aids seems to reduce this risk. As hearing loss is one of the risk factors which affects the most people, it may be a particularly strategic factor to address in reducing the incidence of dementia.

Watch and Learn the A, B, C, Ds to preventing Dementia today!

Source: Agency for Integrated Care

Additional Ways to Lower Dementia Risk

Mindful Mind Food

There is truth in the saying that you are what you eat, especially when it comes to reducing dementia risk. Maintaining a healthy and balanced diet not only makes one feel well, but also helps to reduce dementia risk, amongst other health issues like diabetes and heart disease. A diet rich in fruits, vegetables, unrefined cereals, grains, omega-3 fatty acids (commonly found in oily fish and nuts), and with less red meat may promote overall health and offset or delay the development of dementia. When in doubt, however, approach your doctor for more advice on making healthier dietary choices for a healthier brain.

lifestyle-beautiful-girl-during-yoga-exercise

Keep Your Mind Active – Brain Games

Just as exercise is highly beneficial for physical health, cognitive activities are also good for brain function and reduce the risk of developing dementia. According to Alzheimer’s Disease International (ADI), experiments conducted on both animals and humans showed that mentally stimulating activities are related to measurable improvements in brain vascular health, and in both brain structure and function.5 Another research report from the Rush Memory and Aging Project reports that cognitive stimulating activities (including reading and writing) in a group of 300 cognitively healthy men and women were associated with a slower cognitive decline in the six years prior to  death.6 The above evidence suggests that engaging in mentally stimulating activities, such as reading, playing bridge or chess, or doing puzzles (Sudoku, crosswords, etc.) may offset or delay the development of dementia.

pieces-white-jigsaw-wood

Heart Truths

There is evidence that a healthy heart benefits a healthy brain.

According to Meharvan Singh, Ph.D., Associate Professor of Pharmacology & Neuroscience, the brain receives approximately 15% of cardiac output, meaning that compromised cardiovascular function would reduce supply of blood (and thus oxygen) to the brain. Other research has shown that an increased risk of heart attacks and strokes can increase the chances of developing dementia.

A 2016 study by the University of Southern California found that statins, which are a kind of medication designed to help those with heart conditions, may play an additional role in protecting the brain from dementia.

teenager-woman-hand-with-cross-bible-praying-hands-folded-prayer_2379-1772

Adopting a healthy lifestyle by keeping active, eating a healthy and balanced diet, avoiding smoking and excessive alcohol consumption, and engaging in social activities, together promote good brain health, and can keep dementia as well as other diseases like stroke and heart attack at bay.

In light of the above, regular health checks, such as annual full-body check-ups which include cognitive screenings are encouraged. It is never too early to begin.

Some content is reproduced with permission from Alzheimer’s Disease International’s article on Risk Factors and Risk Reduction.

Downloadable Resources

The following resources contain bite-sized information on Modifiable Risk Factors & Lowering Risk that you may download and/ or print:

Click on the images below to download in English.

5 Ways to Reduce Your Risk of Dementia

Forget Us Not: Building a Dementia Friendly Community

understanding-dementia

Understanding Dementia

References

  1. Ahlskog, J. E., Geda, Y. E., Graff-Radford, N. R., & Petersen, R. C. (2011). Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging. Mayo Clinic proceedings, 86(9), 876–884. https://doi.org/10.4065/mcp.2011.0252
  2. Alzheimer’s Disease International. (2014, July 9). Smoking increases risk of dementia. https://www.alzint.org/news/smoking-increases-risk-of-dementia/
  3. Geneva: World Health Organization. (2019). Risk reduction of cognitive decline and dementia: WHO guidelines. https://apps.who.int/iris/bitstream/handle/10665/312180/9789241550543-eng.pdf?ua=1
  4. Crooks, V. C., Lubben, J., Petitti, D. B., Little, D., & Chiu, V. (2008). Social network, cognitive function, and dementia incidence among elderly women. American journal of public health, 98(7), 1221–1227. https://doi.org/10.2105/AJPH.2007.115923
  5. Albanese, E., Guerchet, M., Prince, M., & Prina, M. (2014). World Alzheimer report 2014: Dementia and risk reduction: An analysis of protective and modifiable factors. Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2014.pdf
  6. Bennett, D. A., Schneider, J. A., Buchman, A. S., Barnes, L. L., Boyle, P. A., & Wilson, R. S. (2012). Overview and findings from the rush Memory and Aging Project. Current Alzheimer research, 9(6), 646–663. https://doi.org/10.2174/156720512801322663

Dementia is a collection of different symptoms characterised by a progressive worsening of memory and intellect (cognitive abilities), orientation, or personality, that is caused by the diseases that affect the brain. It is not a natural part of ageing.

Persons living with dementia eventually lose the ability to do things to a level that affects their daily functioning, such as working, performing daily activities, or social interaction.1 They may gradually find the following abilities challenging:

• Thinking and reasoning
• Problem-solving and making judgements
• Remembering new information or recalling recent events
• Learning new information and skills
• Recognising familiar faces and items
• Finding the right words to communicate

Dementia can affect adults of any age, but it is more common in those aged 65 and above.

Statistics on Dementia on a Global Scale

According to the Alzheimer’s Disease International (ADI),2 someone in the world develops dementia every 3 seconds. There are over 50 million people worldwide living with dementia in 2020. This number will almost double every 20 years, reaching 82 million in 2030 and 152 million in 2050. Much of the increase will be in developing countries. Already 60% of people with dementia live in low and middle income countries, but by 2050 this will rise to 71%. The fastest growth in the elderly population is taking place in China, India, and their south Asian and western Pacific neighbours.

Demographic ageing is a worldwide process that shows the successes of improved health care over the last century. Many are now living longer and healthier lives and so the world population has a greater proportion of older people. Dementia mainly affects older people, although there is a growing awareness of cases that start before the age of 65.

There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.

According to the Well-being of the Singapore Elderly (WiSE) nationwide study spearheaded by the Institute of Mental Health (IMH), 1 in every 10 people aged 60 years and above has dementia, with the condition affecting those above the age of 85.3 This translates into approximately 82,000 people in 2018, and more than 100,000 in the following few years. This number is expected to increase to 152,000 by 2030.4

Downloadable Resources

The following resources contain bite-sized information on What Is Dementia? that you may download and/ or print:

Click on the images below to download in English.

Forget Us Not: Building a Dementia Friendly Community

understanding-dementia

Understanding Dementia

References

  1. Your guide to understanding dementia. (2019, December 9). HealthHub. Retrieved on 24 March, 2021, from https://www.healthhub.sg/live-healthy/679/yourguidetounderstandingdementia_pdf
  2. Dementia statistics. (n.d.). Alzheimer’s Disease International. Retrieved 24 March, 2021, from https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/
  3. Subramaniam, M., Chong, S. A., Vaingankar, J. A., Abdin, E., Chua, B. Y., Chua, H. C., Eng, G. K., Heng, D., Hia, S. B., Huang, W., Jeyagurunathana, A., Kua, J., Lee, S. P., Mahendran, R., Magadi, H. Malladi, S., McCrone, P., Pang, S., Picco, L., . . . Prince, M. (2015). Prevalence of dementia in people aged 60 years and above: Results from the WiSE study. Journal of Alzheimer’s Disease, 45(4), 1127–1138. doi: 10.3233/jad-142769.
  4. Let’s talk about vascular dementia. (n.d.). HealthHub. Retrieved September 11, 2021, from https://www.healthhub.sg/programmes/74/understanding-dementia/

There are many myths surrounding dementia. Here are some common myths that have often exacerbated the stigma of dementia and perpetuated negative stereotypes about the condition.

Misconception: Dementia is a natural part of ageing.

Dementia is an illness that affects the brain and is not a natural part of ageing.

It is a condition that affects the brain, leading to progressive memory loss, decline in cognitive abilities, and personality changes.

In normal ageing, a person may:

• Still be able to pursue daily activities and function independently, despite occasional memory lapses.
• Require some time to remember directions and/or navigate new places.
• Still be capable of judgment and decision-making.
• Be able to recall and describe significant events.
• Have difficulty finding the right word to communicate but has no problem in holding a conversation.

Misconception: Dementia is the same as Alzheimer’s Disease.

There are different types of dementia, each with different causes and symptoms. What is common across causes of dementia is changes in the brain.

The causes of dementia include: Irreversible causes such as Alzheimer’s Disease, Vascular Dementia, Stroke, Parkinson’s Disease, Lewy Body conditions, and Fronto-temporal causes of dementia; and potentially reversible causes such as Hypothyroidism, Vitamin B12 Deficiency, and Alcohol-related syndromes.

Misconception: Memory loss means a person has or is going to have dementia.

Some memory lapses and the slowing of processing speed, such as with finding the right word, occurs with ageing.

Misconception: Persons living with dementia only experience memory loss.

Memory loss (forgetfulness) is one of the symptoms experienced by persons living with dementia. It is not the only symptom.

Common symptoms of different types of dementia include:

• Memory loss (forgetfulness) that occurs gradually, and worsens progressively with time. Immediate and short-term memory loss occurs first.
• Difficulty in communication.
• Problems recognising familiar faces or items.
• Worsening of general problem-solving, decision-making, judgment abilities and becoming more disorganised.
• Problems with daily activities such as buttoning of shirt, dressing and using utensils during mealtimes.

Sometimes, other behavioural and psychological symptoms may also occur:

• Depression
• Agitation
• Hallucinations
• Anxiety
• Paranoia
• Sleep problems

Misconception: Dementia only affects older people.

Dementia can also occur to younger persons. Dementia in persons below age 65 is known as young-onset dementia.

There is a rising trend in young-onset dementia cases in Singapore, as it is in some other countries. This may be due to a few reasons, including greater awareness of the condition and better screening methods.

The top two causes for young-onset dementia are currently Alzheimer’s disease, which is the most common cause, and vascular dementia.

Vascular dementia, where a series of mini-strokes occurs in the brain, is related to lifestyle diseases such as diabetes and high blood pressure. The rising trend in lifestyle diseases could be contributing to the rising rate of dementia diagnosis in younger persons.

How dementia looks like in a younger adult may be different from how it looks like in an older adult. Younger persons living with dementia tend to have more problems with language, problem-solving, planning, and object recognition. They may also show more behavioural changes.1,2

Misconception: Dementia can be completely prevented.

Dementia cannot be completely prevented with absolute certainty.3 However, there are ways to lower the risk of developing dementia.

Some risk factors of dementia, such as age, genes, or a lower level of educational attainment, are difficult or impossible to change.

However, the following can be done to lower the risk of dementia, or to delay the onset of dementia:

• Be physically active and exercise regularly
• Keep blood pressure at a healthy level
• Monitor blood glucose if you have diabetes
• Eat a balanced diet
• Quit smoking
• Go for regular health screening
• Refrain from heavy alcohol intake
• Be socially engaged

Misconception: Life is over for a person and the people around them when they develop dementia.

Developing dementia is not a death sentence. A person living with dementia can continue to adapt to life with their condition and can still live a meaningful life.

The person living with dementia and the people around them can still experience personal growth, relational growth, and enjoy meaningful experiences amidst the grief and loss that occurs with the progression of dementia.

Because dementia develops in a progressive way, and the loss of capabilities does not happen all at once, persons living with dementia continue to be able to do things for some time.

Depending on where they live, there may be support for persons living with dementia to continue to be included in meaningful social life. For example, in Singapore, there is growing awareness of dementia. There are also dementia-inclusive initiatives being carried out by different sectors and partners in the community to design the environment in a way that enables persons living with dementia and their caregivers to participate in community life.

Find out more on Dementia-Inclusive Environments.

Misconception: There is no use of treating dementia because there is no cure.

Although there is no cure for dementia, there are both pharmacological and psychosocial methods to manage the conditions of persons with dementia.

• Reversible causes and risk factors can be treated.
• Medications to slow the progression of dementia can be taken.
• Medications to improve the cognitive symptoms in Alzheimer’s Disease can be taken.
• Behavioural and Psychological Symptoms of Dementia (BPSD) can be managed through non-medication measures and with medication.

Misconception: Persons living with dementia are unable to make decisions, are unable to do things, cannot communicate, or are not aware of their surroundings.

Dementia develops gradually. During the earlier stages, persons living with dementia will still have some level of ability to make decisions, perform different actions, communicate, and be aware of themselves and their surroundings. Even during the later stages of dementia, persons living with dementia do have preferences, abilities, ways to communicate and awareness, which are expressed in their own way.

Misconception: Dementia is hereditary.

Something is hereditary if it is passed from parents to offspring through genes. In the majority of cases, dementia is not strictly inherited.

• Firstly, the development of dementia happens because of a combination of genetic and environmental factors. These factors work together to increase or decrease a person’s risk of developing dementia. A person with a biological parent or relative who has developed dementia will not necessarily develop dementia. However, this person’s risk of developing dementia will be increased.
• Secondly, the type of dementia a biological parent or relative has will affect the risk of a person developing dementia. Some types dementia, such as frontotemporal dementia, have a stronger genetic link compared to other types of dementia.

Watch ONE FM 91.3 radio hosts have a conversation with Dementia Singapore CEO Jason Foo about some myths about dementia.

References

  1. Gan, E. (2017, June 14). Dementia affecting more people under the age of 65. TODAYOnline. https://www.todayonline.com/singapore/dementia-affecting-more-people-under-age-65
  2. Teo, J. (2020, 21 June). More here diagnosed with young onset dementia, says NNI. SingHealth. https://www.singhealth.com.sg/news/tomorrows-medicine/more-here-diagnosed-with-young-onset-dementia-says-nni
  3. National Health Service. (n.d.). Can dementia be prevented? Retrieved 4 March, 2021, from https://www.nhs.uk/conditions/dementia/dementia-prevention/

Some conditions share symptoms with dementia. Here is a comparison between dementia, mild cognitive impairment, depression, and delirium:

Dementia & Mild Cognitive Impairment (MCI)

Dementia and mild cognitive impairment are different conditions.

Mild Cognitive Impairment (MCI) is a disorder with a modest but noticeable and measurable decline in cognitive abilities including memory and thinking skills.

A person with MCI is still able to function at his/her usual level but is at an increased risk of developing dementia.

Unlike dementia, MCI does not impair a person’s ability to carry out simple routine tasks or lead a normal life.

Adapted from: SingHealth1

Dementia & Depression

As both depression and dementia can share very similar symptoms such as isolation, a declining interest in hobbies, social withdrawal, and detachment, the two conditions can be easily confused. Severe depression can also sometimes cause a group of cognitive impairment symptoms known as pseudodementia, making it harder for one to articulate their feelings associated with depression.

Though research on the link between dementia and depression is still developing, many sources suggest that having symptoms of dementia in mid- or late life is associated with a higher risk of developing dementia.2 However, persons living with depression do not necessarily develop dementia.

Some key differences between dementia and depression are:3

• Onset, duration, and course: The onset of dementia is slow and insidious, with a progressive and irreversible deterioration; depressive episodes consist of mood changes that can last from two weeks to years, but are reversible.

• Mood: A depressed mood may be, but is not definitely present in early dementia; a depressed mood is definitely present in a person who experiences dementia.

• Thinking: With dementia, there is often difficulty with word-finding and abstraction, but in dementia, thinking is often intact, though the content of thought often has themes of helplessness and hopelessness.

Dementia & Delirium

Delirium refers to an abrupt change in the brain that is characterised by a fluctuation in the person’s level of consciousness, psychomotor disturbances, memory impairments, emotional changes, and altered cognition or perception, that occurs over hours or days. Risk factors include the development of a physical illness, sensory impairments, recent surgeries, and use of drugs or substances (either prescribed or illicit). Delirium is usually reversible.

Delirium does not necessarily occur with dementia, and persons without dementia can encounter delirium too. Unlike delirium, dementia slowly progresses over years, does not disturb levels of consciousness, is permanent, and has fairly consistent signs and symptoms. The behaviour of persons living with dementia is also fairly consistent on a day-to-day basis.

Adapted from: Changi General Hospital4 and HealthXchange.sg5

References

  1. SingHealth. (n.d.) Mild Cognitive Impairment (MCI): Signs and Symptoms. HealthXchange.sg. Retrieved on 5 March, 2021, from https://www.healthxchange.sg/seniors/ageing-concerns/mild-cognitive-impairment-signs-symptoms
  2. Barnes, D. E., Yaffe, K., Byers, A. L., McCormick, M., Schaefer, C., & Whitmer, R. A. (2012). Midlife vs late-life depressive symptoms and risk of dementia: Differential effects for Alzheimer disease and vascular dementia. Archives of general psychiatry, 69(5), 493-498.
  3. Victoria State Government. (n.d.). Differential diagnosis – depression, delirium and dementia. health.vic. Retrieved April 28, 2021, from https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/older-people/cognition/diff-diagnosis
  4. Changi General Hospital. (2019, January 10). Delirium: Symptoms and Management. HealthHub. https://www.healthhub.sg/a-z/diseases-and-conditions/627/delirium
  5. Lim, S. C. (n.d.). Dementia and Delirium: Know the Difference. HealthXchange.sg. Retrieved on 24 March, 2021, from https://www.healthxchange.sg/head-neck/brain-nervous-system/dementia-delirium-difference

Dementia is not a single disease but a collection of symptoms. There are different kinds of dementia that occur caused by different changes in the brain.

Alzheimer’s Disease (AD)

Alzhemer’s disease is the most common type of dementia. It is caused by the build-up of certain kinds of proteins in and around brain cells. It has an insidious (slow) onset and is a progressive disease whereby symptoms gradually worsen over a number of years. AD is irreversible, slowly impairs memory and thinking skills, and may eventually affect the ability to carry out simple tasks such as eating. Currently, there is no cure for this disease but treatment can help manage symptoms of AD.

Vascular Dementia

Vascular dementia is a type of dementia that is caused by a disease or injury to blood vessels in the brain, mostly in the form of strokes. The onset of this kind of dementia may be abrupt, and symptoms depend on the location and impact of the stroke. A person with vascular dementia may also show evidence of silent strokes on brain scans. While vascular dementia is not reversible, it is important to treat its risk factors. Controlling risk factors such as high blood pressure, diabetes mellitus, high cholesterol, and smoking may slow the disease’s progression and reduce stroke recurrence.

Lewy Body Dementia (LBD)

Lewy body dementia is a type of dementia that occurs when there is an abnormal build-up of structures called Lewy bodies inside brain cells. This causes changes in movement, thinking and behaviour. Symptoms of LBD can sometimes also happen due to Parkinson’s disease – these symptoms include slowness, tremors, rigid muscles and vivid visual hallucinations. Other prominent symptoms include problems with attention, organisation, problem solving, and planning. People with LBD have higher risks for falls in view of their increased rigidity, instability and slow gait.1

Fronto-Temporal Dementia (FTD)

Fronto-temporal dementia is a type of dementia that is characterised by marked personality changes and in some cases, language difficulties. It is caused by progressive damage to the frontal and/or temporal regions of the brain. FTD can lead to reduced intellectual abilities and changes in personality, emotion and behaviour, which are related to the function of the brain’s frontal lobe. FTD can also cause difficulty in recognising objects, understanding, or language expression, which are related to the function of the brain’s temporal lobes.

Due to these symptoms, FTD can be mistaken for Alzheimer’s disease, Parkinson’s disease or a psychiatric disorder like depression, obsessive-compulsive disorder or schizophrenia. There is no treatment or cure yet but medications and lifestyle changes can help to relieve the symptoms. Most people affected by FTD are younger, between 40-70 years of age.

Alcohol-Related Dementia

Alcohol-related dementia is a cognitive disorder caused by alcohol-related brain damage. Some parts of the brain may be damaged through vitamin deficiencies, especially severe vitamin B-1 deficiency, since alcohol prevents this vitamin’s absorption and use. A risk factor for alcohol-related dementia is regular drinking of large volumes of alcohol.2

Downloadable Resources

The following resource contain bite-sized information on Different Types of Dementia that you may download and/ or print:

Click on the image below to download in English.

understanding-dementia

Understanding Dementia

References

To build up the capability of our care professionals, the Agency for Integrated Care (AIC) has a Dementia Care Competency Framework.

dementiahub

Dementia Awareness: Foundation Level

dementia-hub-sg

Through this online course, you will get to learn the following and receive a certificate upon completion of the evaluation form and module.

• What is Dementia, its types, and risk factors
• ABCD Signs and Symptoms of Dementia
• Interacting & communicating with people living with dementia
• Ways to reduce the risk of getting dementia
• Dementia-Friendly Communities

Course code on AIC LMS 2.0: AIC-BPS-B-200

Click here or scan the QR code below to access the course on AIC LMS:

dementiahub

Dementia Care Basic Level – The Brain and Understanding of Dementia

Through this online course, you will get to learn the following and receive a certificate upon completion of the evaluation form and module.

• Describe the parts of the brain and their functions
• Understand what is dementia
• Recognise how a diagnosis of dementia is made
• Differentiate the types of dementia

Course code on AIC LMS 2.0: AIC-BPS-B-200A

You may also scan the QR code below to access the course on AIC LMS:

dementiahub

Dementia Care Basic Level – Person-Centred Care and Behaviours of Concern

Through this online course, you will get to learn the following and receive a certificate upon completion of the evaluation form and module.

• Describe the concept of Person-Centred Care
• Recognise the philosophy of care of persons living with dementia
• Define the VIPS
• Classify the unmet needs
• Manage the behaviours of concern

Course code on AIC LMS 2.0: AIC-BPS-B-200B

You may also scan the QR code below to access the course on AIC LMS:

dementiahub

Dementia Care Basic Level – Enriching Lives

Through this online course, you will get to learn the following and receive a certificate upon completion of the evaluation form and module.

• Recognise the importance of activities/ engagement for a person living with dementia
• Describe what is an activity
• Assess the individual’s needs and abilities
• Plan activities for person living with Dementia

Course code on AIC LMS 2.0: AIC-BPS-B-200C

You may also scan the QR code below to access the course on AIC LMS:

dementiahub

Screening vs Diagnosis

Screening persons for dementia and a diagnosis of dementia are two different things.

Screening for dementia with tools like the Abbreviated Mental Test (AMT) and Mini Mental State Examination (MMSE) cannot be used to diagnose a person with dementia. They are instead used to spot some obvious symptoms of dementia in persons being screened, after which persons who have been identified with dementia symptoms may be encouraged to consult a doctor for further testing.

Persons who have been identified as having dementia symptoms during screening do not necessarily have dementia, and vice versa: there is some chance that some persons who have not been identified as having dementia symptoms may have dementia.

Dementia screenings are helpful, but are not as thorough as a medically qualified professional’s evaluation and diagnosis.

If someone you know shows signs of dementia, please consult a doctor for testing and diagnosis.

Diagnosis

In Singapore, only medically qualified professionals, i.e. doctors, can diagnose dementia. A family doctor can be consulted for an initial assessment. If necessary, the doctor may refer the case to specialists (geriatricians, psychogeriatricians, neurologists and psychiatrists) for an official diagnosis.

Qualified professionals who can conduct dementia diagnoses are found at healthcare institutions such as family clinics and hospitals, and certified general practitioners’ clinics.

Source: Agency for Integrated Care (AIC)

Diagnosis can be conducted at several places including the hospitals listed below and certified general practitioners’ clinics.

One may obtain a professional diagnosis by approaching the places below:

Memory Clinics

One may contact any of the memory clinics in Singapore below.

Tan Tock Seng Hospital

Geriatric Medicine Clinic [Basement 1]
11 Jalan Tan Tock Seng Singapore 308433
Tel: 6359 6100
Fax: 6359 6101


Institute of Mental Health

Psychogeriatric Clinic
10 Buangkok View
Singapore 539747
Tel: 6389 2200
Fax: 6385 1075
*See ‘Downloadable Resources’ below


National University Hospital

Neuroscience Clinic
5b Lower Kent Ridge Road
Singapore 119074
Tel: 6779 5555
Fax: 6779 5678


Changi General Hospital

Geriatric Clinic
2 Simei Street 3
Singapore 529889
Tel: 6850 3510
Fax: 6787 2141

Ng Teng Fong Hospital

Geriatric Medicine 1
Jurong East Street 21
Singapore 609606
Tel: 6716 2000 (24 hours)  |  6716 2222 (appointment)


Singapore General Hospital

Department of Neurology
Outram Road
Singapore 169036
Tel: 6321 4377
Fax: 6220 3321
Email: appointments@sgh.com.sg


NNI @ TTSH Campus

Neuroscience Clinic, Level 1
National Neuroscience Institute
11 Jalan Tan Tock Seng
Singapore 308433
Tel: 6357 7095
Fax: 6357 7103
Email: appointments@nni.com.sg

General Practitioners

One can approach local General practitioners (GPs) who are certified to support and provide mental health assessments and diagnosis.

A recommended list of certified GPs can be found at Pg. 83 to 86 in ‘A Resource Kit for Caregivers’ by AIC.

Helplines

One can call the following helplines for more information.

a) Dementia Helpline by Dementia Singapore: 6377 0700
b) Agency for Integrated Care Hotline: 1800-650-6060
c) HealthLine by Health Promotion Board (HPB): 1800-223-1313

Downloadable Resources

The following resources contain bite-sized information on the IMH Memory Clinic that you may download and/ or print:

Click on the images below to download in English or select another language.

IMH Memory Clinic

If you suspect a person is displaying the signs and symptoms of dementia, you should encourage him or her to get properly diagnosed and treated. However, starting a conversation with someone on this sensitive issue may not be easy.

This article will first provide a short guide to how to start a conversation with a person living with dementia about getting a diagnosis, and then detail some guiding points about how to navigate these conversations.

A Short Guide to Starting a Conversation About Getting a Diagnosis

To encourage someone to talk when you’re worried about how their memory loss has affected them, you can:

1. Have the conversation in a familiar and relaxing place.
2. Cite examples of their behaviour to initiate awareness.
3. Have a frank conversation to discuss their needs and issues.

You do not need to get the person to agree to visit a doctor for a diagnosis in just one session. This is a difficult development to process, so it may take some time for the person to accept it.

Here are some questions that you may use to start the conversation:

• You seem worried; how can I help?
• You don’t seem yourself today, how are you feeling?
• Are you ok? You seem to be concerned about something.

Being diagnosed with dementia may come as a surprise to someone at first. However, with a clear diagnosis, persons living with dementia can get the information, treatment, management, and support needed to manage the symptoms.

Depending on the person’s comfort level, sharing concerns with family members early in the conversation can:

• Coax the person to obtain a diagnosis and seek support.
• Prepare family members early for the caregiving role.
• Help both the person and caregiver(s) to plan for the future.

The First Hurdle

Our first reactions upon receiving bad news are often to feel worried or helpless, or to lapse into denial. The mild and progressive nature of dementia also makes it convenient for people to brush off the symptoms as either a natural byproduct of ageing or a minor inconvenience. Any talk of it being a sign of something ominous or as a possible symptom of dementia is dismissed or explained away. Frequently misplacing things around the house may spark the response “I’m so forgetful”, and an older person’s mood swings may appear to some as them simply being unreasonable or seeking attention.

Rather than wait for a ‘defining incident’ to give dementia significance, put the truth gently to them. Cease making excuses for them and trivialising the signs. Without pointing out all the signs and symptoms you observe, try to help them connect the dots. With the intention to guide them towards early detection and diagnosis, subtly provide information on the symptoms of dementia that may gradually reveal to them what they might be trying to deny.

Seize The Opportunity

Often, the person’s reluctance to see a doctor is a result of fear, denial, or a desire to hold on to their decision-making abilities for as long as they are able to do so. Acknowledge their emotions and fears. Give them the room to embrace their true emotions but make use of opportunities to bring them to the doctor. For example, if they have been expressing concerns about cognitive symptoms or other health symptoms they acknowledge, you could take these opportunities to encourage them to go for a doctor’s consultation where dementia-related symptoms could be raised.

Reframe Your Approach

Knowing the barriers holding a person back from getting an early diagnosis is not sufficient. Ease their concerns by exploring these barriers with them and try to empathise with their emotions while providing reassurance. Share that seeing a doctor is the best course forward for them.

Instead of repeatedly emphasising the importance of early diagnosis, try asking them for a favour. Sometimes, individuals will do something for others that they would not do for themselves. Making a doctor’s appointment a favour they can do for you may prove to be a good strategy. Reframing the purpose of the visit will help to provide clarity and make things less intimidating for people living with dementia.

According to Diana Kerwin, MD, chief of geriatrics at Texas Health Presbyterian Hospital Dallas and the director of Texas Alzheimer’s and Memory Disorders, it helps for family members of persons who may have dementia to treat a doctor’s appointment as another preventive medicine visit like a colonoscopy or bone density testing. This appointment could also be described as a brain check-up.2

No one wants to see a loved one diagnosed with dementia or Alzheimer’s Disease. But the sooner they get it checked, the earlier care and support can be rendered. On the flip side, it can be even more comforting should the check-up show nothing out of order. What is certain is that one never loses out by getting themselves checked – and it all begins with a trip to the doctor.

If you are experiencing difficulty getting someone, who is suspected of dementia, to get a diagnosis, watch Dr Joshua Kua’s advice on how to encourage him/her to seek help:

Source: Agency for Integrated Care

References

  1. Agency for Integrated Care. (n.d.). Living with Dementia, A Resource Kit for Caregivers, Knowing Dementia. https://www.aic.sg/resources/Documents/Brochures/Mental%20Health/4%20Books/Book%201%20-%20KNOWING%20DEMENTIA.pdf
  2. Johnson, L. (April 18, 2019). Dementia Care: Navigating a Doctor’s Visit with Your Loved One. Retrieved May 4, 2021, from https://www.healthline.com/health/dementia-care-visiting-the-doctor-with-your-loved-one
  3. Dementia Singapore. (2017, October 24). Dealing with Dementia: The First Step. https://dementia.org.sg/2017/10/24/dealing-with-dementia-the-first-step/

All types of dementia are progressive. This means that while symptoms may at first be mild, they deteriorate with time. As dementia progresses, a person with this condition will need increasingly more help and support with daily living. Dementia affects every individual differently. This includes their experience of the symptoms, the rate at which the condition progresses (which itself varies across the different types of dementia), and the type and level of support required.

There are several stages of dementia. In all types of dementia, memory problems are the early signs. The deterioration in cognitive skills is gradual and in later stages, daily activities will become increasingly challenging without assistance.

Dementia progression can generally be classified into three stages – the mild, moderate, and advanced stages. These stages are a simplified explanation on how dementia symptoms change over time, and can be used as a guide to help persons living with dementia and their loved ones prepare for the future. It may be difficult to place a person’s condition in a specific stage as symptoms may appear in a different order and stages may overlap.1 However, understanding the stages as such helps us see how dementia progresses in general.

The following provides an overall idea of how the symptoms affect a person living with dementia and change across the three stages:

Activities of Daily Living

  • Mild Dementia

    • Still able to care for self in basic activities of daily living, i.e. personal hygiene, dressing
    • May have some difficulty with:

    ⇒ Taking public transportation
    ⇒ Money management

    • May have difficulty planning and managing household tasks such as cleaning and cooking
    • May have difficulty initiating activities

  • Moderate Dementia

    • Needs regular reminders and prompts in daily tasks
    • Requires assistance with dressing, personal hygiene, going to the toilet, eating, and some other daily activities.
    • High risk of falling

  • Advanced Dementia

    • Unable to care for self. Total dependence in taking care of own hygiene, eating, going to the toilet, and taking a shower
    • Problems with balance, coordination, resulting in instability and falls
    • Likely to have mobility issues, could be bed-bound
    • Eating and swallowing problems
    • Loss of bladder and bowel control

Behaviours

  • Mild Dementia

    • Apathy; lack of interest in activities they used to engage in
    • May become socially withdrawn
    • Rapid mood changes or have low mood

  • Moderate Dementia

    • Wandering
    • Repetitive actions/ questions
    • Sleep reversal
    • Frustration at not being able to communicate well
    • May appear depressed, and more easily upset, frustrated, agitated, and suspicious

  • Advanced Dementia

    • Crying, shouting or repetitive vocalisation as a means to communicate needs
    • Refusing care due to confusion
    • Passive/ withdrawn

Cognitive Decline

Memory

  • Mild Dementia

    • Forgetfulness (Difficulty with short-term memory)
    • Impaired judgement
    • Impaired abstract thinking
    • Misplacement of items

  • Moderate Dementia

    • Difficulty with short- and long-term memory
    • May begin to forget or be unable to recognise certain family members
    • May begin to be unable to remember own address or phone number

  • Advanced Dementia

    • No apparent awareness of past or present
    • Inability to recognise current self
    • Inability to recognise common objects

Language & Communication

  • Mild Dementia

    • Difficulty in following storylines and conversations
    • Difficulty finding the right words or remembering names

  • Moderate Dementia

    • Difficulty in communication due to repetitive speech or inability to understand contexts
    • Difficulty in expressing emotions and making needs known

  • Advanced Dementia

    • Unable to communicate through language
    • Unable to engage in meaningful conversations
    • May not be able to communicate or may be unresponsive at times
    • Incoherent speech
    • May express needs by yelling

Calculation

  • Mild Dementia

    • Problems with handling finances

  • Moderate Dementia

    • May have problems performing simple calculations

  • Advanced Dementia

    • Unable to perform any calculation

Disorientation

  • Mild Dementia

    • May occasionally feel disoriented, but may be able to navigate frequently visited places
    • May get lost in less familiar places

  • Moderate Dementia

    • May experience confusion in general; may have poor orientation to day, date and/or time
    • May get lost outdoors, even in familiar places

  • Advanced Dementia

    • Unable to differentiate day and night
    • May get lost at home

Downloadable Resources

The following resources contain bite-sized information on The ABCDs of Dementia Progression that you may download and/ or print:

Click on the images below to download in English or select another language.

Forget Us Not: Building a Dementia Friendly Community

understanding-dementia

Understanding Dementia

References

The worsening of the cognition of a person living with dementia may interfere with their activities of daily living and result in changes to their behaviours and emotions. The person’s personality may appear to have changed and become “very different from their ‘old self’”.

The main objectives of managing dementia symptoms are typically to:

• Improve the quality of life of persons living with dementia;
• Maximise or maintain their functional independence;
• Minimise any behavioural and/or emotional changes; and
• Minimise family caregivers’ stress.1

When it comes to dealing with almost any kind of illness or disease, medical intervention, especially in the form of drugs and medicines, are what we often turn to first. It is no different for dementia. A person diagnosed with dementia may ask questions like “Is there any medicine I can take to get better?” While there is currently no medicine that can completely cure dementia, there are treatments to help alleviate some of the symptoms that occur with dementia.

It has been suggested that for persons living with dementia, non-pharmacological interventions should be the first course of action as they work better and carry less risk when it comes to treating common symptoms such as irritability, agitation, depression, anxiety, sleep problems, aggression, apathy, and delusions. Some examples of non-pharmacological approaches include regular structured routine, good sleep hygiene, and reminiscence.1

In conclusion, effective and holistic intervention plans for persons living with dementia often require an integration of pharmacological and non-pharmacological (also termed as “psychosocial”) approaches.

In the following video, Dr. Chen Shiling of Khoo Teck Puat Hospital shares about why there is more to dementia treatment than just drugs. She raises three aspects of treatment and shares her past experiences that helped her understand how to care for a loved one living with dementia.

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital and Dementia Singapore

References

  1. Poon, N. Y., Ooi, C. H., How, C. H., & Yoon, P. S. (2018). Dementia management: A brief overview for primary care clinicians. Singapore Medical Journal, 59(6), 295-299. https://doi.org/10.11622/smedj.2018070

Source: Dementia-Friendly Singapore Initiative

There are many scenarios where persons living with dementia may face difficulties and require assistance.

The K.I.N.D Gesture and C.A.R.E Approach can help us to remember what to do and be more confident when interacting and assisting persons living with dementia, especially in situations where they may appear to be lost.

The K.I.N.D Gesture

When you come across someone who is alone and appears anxious, be K.I.N.D

K

dementia-hub-sg

Keep a lookout for people who show the ABCD signs of dementia. They may also appear unkempt, and/or ask for food or money. The ABCD signs of dementia are:

• Activities of daily living: Difficulty performing daily activities or tasks such as cooking or dressing.
• Behaviour: May be socially withdrawn, more easily upset and frustrated.
• Cognition: Difficulty remembering things, problems with language and performing calculations.
• Disorientation: The person may lose his/her way in less familiar places, have poor orientation of day, date, and/or time.

I

dementia-hub-sg

Interact with patience.

• Ask one question at a time, for e.g., “Can I help?”. Be patient when waiting for a response.
• Talk and communicate slowly.
• Jog their memory by giving them the names of the nearby landmarks or the name of the current location.

N

dementia-hub-sg

Notice their needs and offer help.

• Bring them to a place to sit and rest. You may also offer a drink or some food.
• Ask for the next-of-kin’s whereabouts or contact number, or if they can recall their home telephone number.
• Check if they have some form of identification or look for an identification sticker with next-of-kin’s details e.g. EZ-link Card.

The identification sticker may look like this:

in-case-of-emergency-iced

Check the Dementia Friends app for updates of missing persons. Find out more about the Dementia Friends app, and how to be a Dementia Friend.

D

dementia-hub-sg

Dial for help.

• Call the next-of-kin.
• Alert security if found lost in buildings.
• Bring the person to the nearest Go-To Point that can provide assistance.
• Please call the police at 999 as the last resort.
• Continue to chat with them to provide reassurance until help arrives.

The C.A.R.E Approach

It is important that you communicate with C.A.R.E to someone who may have dementia

dementia-hub-sg
Clear, Simple & Patient When Talking to A Person Living with Dementia

• Use short and simple sentences
• Maintain a calming and comforting tone
• Speak clearly at a slower pace

dementia-hub-sg
Acknowledge His/ Her Concerns

• Smile
• Maintain eye contact
• Put the person at ease
• Be attentive when listening to him/her
• Be prepared to spend more time with him/her

dementia-hub-sg
Respectful & Reassuring

• Bring the person to a quieter location
• Give him/her time to think and respond
• Use a friendly and caring tone
• Show him/her care, concern and encouragement

dementia-hub-sg
Engage to Provide Comfort & Build Trust

• Be friendly
• Create and maintain a comforting presence when talking to the person
• Build a trusting relationship with him/her

⇒ Introduce yourself
⇒ Assure the person you are there to help him or her

• Ask appropriate questions in their preferred language, to help him/her regain self-awareness

⇒ “Who did you come with?”
⇒ “Where are you going?”
⇒ “What would you like me to do?”
⇒ “How would you like me to help you?”
⇒ “Do you want us to give _____ a call”

Downloadable Resources

The following resources provide bite-sized information on the K.I.N.D Gesture & C.A.R.E Approach that you may download and/ or print:

Click on the images below to download in English or select another language.

dementia-friendly-community-living-with-people-with-dementia

Happy Mind, Healthy life! Dementia-Friendly Singapore

We may encounter persons living with dementia in different situations depending on our social or work roles.

Watch this prize-winning video produced by Vinn Bay and Tee Boon Leng as part of the Alzheimer’s Disease International (ADI) conference in March 2009. As you watch, take note of how some members of the public interact with the person living with dementia who is lost in her neighbourhood, and how she feels because of these interactions.

Source: Health Promotion Board

Here are resources on how to apply the K.I.N.D Gesture and C.A.R.E Approach if you meet them in some scenarios listed below.

Though some of these resources are made for persons in specific social roles such as caregivers or service staff, they are also useful videos for the general public to watch since they may be similar to other scenarios encountered by anyone.

Understanding how people interact with persons living with dementia in different capacities also allows us to understand how we as a community can work together to build a more inclusive community.

In Retail & F&B Settings

Retail Settings

This video shows how the K.I.N.D Gesture and C.A.R.E Approach of interacting with persons living with dementia can be applied in retail settings.

Source: Dementia-Friendly Singapore Initiative

These are some scenarios where retail staff may encounter persons living with dementia:

Scenario 1: Someone has difficulty handling money at the point of purchase

What to do


Approach them in a friendly manner

Offer your help

If they are paying by cash, offer to help them count the right amount.

If they are paying by a card or mobile application that requires a Personal Identification Number (PIN) which they may have forgotten, politely suggest that they pay by cash instead.

You can also offer to keep their items first so they can return to purchase them when they have enough cash or recalled their PIN.

What not to do


Rush the person during payment.

Show signs of annoyance or impatience with gestures, facial expressions, or voice, such as folding arms, frowning, or raising your voice.

Scenario 2: Someone has forgotten to pay for their items before exiting the store

What to do


Approach them with a smile.

Ask politely if they may have forgotten to make a payment for the item.

If they are unable to pay, help to contact their family members for assistance.

Alternatively, retain the item and let them go.

Maintain a calm and polite demeanour.

What not to do


Raise your voice at them.

Scold and accuse them of stealing as this will cause them distress.

Scenario 3: Someone looks confused and unsure of the items which they wish to buy

What to do


Approach in a friendly manner

Assist them to identify the items by using visual cues such as the store’s specials and advertisements as appropriate.

If the store stocks the item, bring them to the specific area at which it is displayed.

If the item is not available in store, let them know that it is not available.

Suggest alternative products if appropriate.

What not to do


Ignore or brush them off.

Ridicule or embarrass them.

Scenario 4: Someone repeatedly purchases the same item(s) within a short span of time (e.g. a few times on the same day)

What to do


Politely remind them that they have bought the same items before.

If they realise that they do not need the items, help them return the items to the shelves.

If this is a recurrent issue (e.g., if the person comes back over many days), politely request for their family members’ contact details to inform them.

Note: Only request for them, with their consent, to present you with any identification that they may have. Do not physically search them without their consent.

What not to do


Question them about why they are buying the same items repeatedly.

Attempt to correct them if they insist they had not made those purchases.

Food & Beverage (F&B) Settings

This video shows how the K.I.N.D Gesture and C.A.R.E Approach of interacting with persons living with dementia can be applied in F&B settings.

Source: Dementia-Friendly Singapore Initiative

These are some scenarios where F&B staff may encounter persons living with dementia:

Scenario 1: Someone requests for an item that is not on the menu

What to do


Explain that the item is not available.

Show them the menu again and offer options that are similar to their requests.

It could be helpful to write the order down on paper to verify the order with them.

If the customer looks unable to decide or is confused, offer a seat where they can wait and calm down and take some time to decide.

What not to do


Show signs of impatience such as folding arms, raising your voice, or frowning when taking orders.

Scenario 2: Someone claims that their order is wrong when it is being correctly served to them

What to do


Politely show them a record of the order, such as the order chit.

What not to do


Argue or insist that they are wrong.

Scenario 3: Someone has trouble articulating or deciding their orders

What to do


Let them take their time.

Show them that you have their full attention by listening attentively, e.g. by repeating their order back to them.

You may try to assist if they have problems finding the right words for their orders.

You can cue them by using the menu and have them point to the item.

What not to do


Rush them to order their food.

Show annoyance, impatience, or a condescending attitude.

Public & Private Transport Settings

These are some scenarios where staff working in transport settings may encounter persons living with dementia:

Scenario 1: Someone gives an address that does not exist
Scenario 2: Someone does not disembark at the terminal or looks disorientated

What to do


Stay calm and patient.

Ask the person where they would like to go, and if possible, ask them to describe their destination.

If the address they provide does not exist, inform them politely.

If the address they provide is valid, guide them to the appropriate train/bus/taxi service. You may try to work with your transport teams to guide the person living with dementia safely back home, especially if the person’s route may involve multiple instructions and require coordination between personnel at different stations.

If they are unable to decide and look confused, offer help by asking them for the contact details of their family members.

If their address is available, offer to bring them home.

If no address can be found, stay calm and contact the police for help.

Note that you may only request for them to present you with any identification they may have. Do not physically search them without their consent.

What not to do


Ask them to get off the vehicle.

Leave them on their own without helping them.

Show annoyance or impatience such as frowning or raising your voice.

Scenario 3: Someone has insufficient balance on their fare cards and are confused about what to do

What to do


Bus captains may suggest that they pay by cash and help them to count the correct fare.

MRT station staff may direct them to the top-up machines and guide them.

If the person is not carrying money or fare cards, contact the nearest passenger service. centre/interchange for help.

Request for the person’s identification (e.g. I.C., EZ-Link card, NCSS card, or other cards) to contact their family members and get help.

If no one is available, remain calm and contact the police.

What not to do


Rush the person to pay up.

Show annoyance or impatience such as frowning or raising your voice.

Scenario 4: Eating and drinking on public transport

What to do


Politely show them the relevant signs in the bus or train for them to better understand what you are trying to tell them.

Politely remind them that they are on public transport.

If they continue to eat or drink, ask for help from HQ or supervisors.

What not to do


Scold them or confiscate their food and/or drink.

Ask them to get off the vehicle and leave them on their own without helping them.

For Bus Operators

This video shows how bus operators can interact with persons living with dementia.

Source: Dementia-Friendly Singapore Initiative

For Train Operators

This video shows how train operators can interact with persons living with dementia.

Source: Dementia-Friendly Singapore Initiative

For Private-Hire Vehicle Operators

This video shows how private-hire vehicle operators can interact with persons living with dementia.

Source: Dementia-Friendly Singapore Initiative

Bank Settings

These are some scenarios where staff working in bank settings may encounter persons living with dementia:

Scenario 1: The person forgets their Personal Identification Number (PIN) and/or signature

What to do


If the person forgets their PIN, politely ask if they would like to sign instead.

If they are unable to sign (as per bank records) or appear confused, request for their family members’ contact details or search the bank’s records to inform the family and request for their help.

Allow the person time to enter their PIN or sign.

What not to do


Rush them to make a decision.

Show annoyance or impatience such as frowning or raising your voice.

Scenario 2: Someone has trouble articulating their requests

What to do


Let the person take their time to think.

Politely ask if they would like to make a deposit, withdrawal, or a transfer.

Ask for their identification document, and check their transaction history to be able to guide them.

Use bank pamphlets as a way to cue them and find out about their requests.

What not to do


Rush the person while they try to articulate their request.

Show annoyance or impatience such as frowning or raising your voice.

Scenario 3: Someone comes in repeatedly within a short span of time (e.g. a few days) to withdraw substantial amounts of money

What to do


Politely inform them that they have made similar withdrawals earlier.

If they cannot recall having done so, show them their transaction records.

If necessary, consider showing them the CCTV footage of their recent visits.

What not to do


Create the impression that they are being stopped from withdrawing money.

Attempt to correct them if they insist that they had not visited the bank earlier.

Scenario 4: Someone mistakes the bank for another bank, or one that they used to go to in the past

What to do


Politely inform the person of your bank’s name and provide directions to their bank.

In the event that the bank is unfamiliar or is no longer in existence, bring them to a quiet area and contact their family members for help.

Ask for help from a supervisor if needed.

What not to do


Brush the person off or ignore them.

Ridicule the person.

Places of Worship

These are some scenarios where people in places of worship may encounter persons living with dementia:

Scenario 1: Someone performs prayers or rituals incorrectly or repeatedly
Scenario 2: Someone repeatedly visits places of worship or loiters around the premises looking lost

What to do


Start a casual conversation to find out whether they stay nearby.

If necessary, assist by bringing them back and make a note of this to the full-time staff in case this happens again.

If you notice that they continue to appear distressed or disorientated, try to find out the contact details of their family members and offer help.

You may need to contact the police if family members cannot be contacted.

Note that you may only request for their identification; do not physically search them without their consent.

What not to do


Attempt to correct them even if they have performed the rituals wrongly.

Make them feel that they are not welcome.

Question their rationale for coming to the place of worship.

One Day of Navigating Community Spaces as a Person Living With Dementia

Persons living with dementia participate in community spaces just as other community members do.

The following video shows an example of how one such person may navigate community spaces while living with their condition. It shows both positive and negative examples of how others may respond after recognising the ABCDs of Dementia Progression.

As you watch the video, place yourself in the shoes of the community members encountering this person living with dementia, and see the differences simple actions can make to these persons living with dementia.

Source: Dementia-Friendly Singapore Initiative

How Communication Can Be Affected at Different Stages of Dementia

As the condition of a person living with dementia progresses, the way in which others communicate and interact with them should also change in order to tailor the interaction to their needs, and to make the most of each conversation or interaction.

  • Early Stage

     

    The person living with dementia

    ⇒ Is able to follow and maintain meaningful conversations with difficulty in articulating certain words

    ⇒ May display some difficulties in giving/receiving instructions and understanding difficult ideas

    ⇒ May ask questions to confirm information frequently or repeat conversations

    ⇒ Able to communicate in brief social interactions with difficulty functioning in prolonged social settings

    ⇒ Difficulty with following lengthy conversations

    ⇒ May follow what is said, but forget it after a brief period

    ⇒ Jokes and sarcastic remarks can be confusing, and may provoke sensitive feelings towards context

    ⇒ May feel overwhelmed by excessive stimulation

  • Moderate Stage

     

    The person living with dementia

    ⇒ May be able to follow simple one-step instructions

    ⇒ May start to show more difficulty in following and maintaining conversations

    ⇒ May understand written information in a word-by-word process

    ⇒ May have decreased use of words for conversations

    ⇒ May repeatedly ask questions

    ⇒ May withdraw from the interaction if interaction is demanding

    ⇒ May experience personality and behavioural changes; E.g. suspiciousness and delusions which may hinder meaningful conversations

  • Advanced Stage

     

    The person living with dementia

    ⇒ May not be able to articulate meaningful statements

    ⇒ May start to repeat after the person in the conversation

    ⇒ May experience difficulty with verbal communication as ability to recall vocabulary may be reduced

    ⇒ May not be able to understand simple words being spoken to them

    ⇒ May express themselves verbally in patches or strings of words and sounds

    ⇒ Conversations may be disconnected

    ⇒ May not be aware of conversations directed to them, and may not be able to talk with others at all

    ⇒ May rely more heavily on visual cues, context, tone of voice, and touch to understand what others are communicating to them; use of non-verbal communication methods is recommended

    ⇒ May lapse into a familiar language used in their native country or their mother tongue

Adapted from: Communication Skills with Persons with Dementia by Khoo Teck Puat Hospital and Living with Dementia: A Resource Kit for Caregivers (Providing Care) by Agency for Integrated Care

How to Communicate With Persons Living With Dementia

Some Tips For Caregivers

Interacting with the CARE approach

Source: Dementia-Friendly Singapore Initiative

Find out more about the K.I.N.D Gesture and C.A.R.E Approach.

Speaking with persons living with dementia

This video provides some suggestions on how caregivers can speak with persons living with dementia.

Source: ForgetUsNot Project by LIEN Foundation

Caregiving in public spaces

A caregiver’s sharing of a past experience where she and her mother, who lives with dementia, were interacting with members of the public.

Source: ForgetUsNot Project by LIEN Foundation

General Tips for Interaction With Persons Living With Dementia

1. Do not test the memory of persons living with dementia by asking them what they did recently.
Because of the disease, they are not able to remember many things. You will frustrate them by asking, “Don’t you remember?” Use memory aids like diaries, clocks or calendars to help them know what they have done and will be doing later.

2. Simplify activities and communication.
Break an activity down into simple, step-by-step tasks. The person will be able to focus on one step at a time and complete the activity. Keep sentences short and simple.

3. Offer reassurance and praise.
This will increase the person’s self-esteem and reinforce positive behaviour.

4. Do not argue with the person living with dementia.
What they see, hear or recall may not be the same as what you saw, heard or know.

5. Identify and remove triggers to unhelpful behaviour.
For example, if the person wants to go out of the house each time he sees shoes by the door, keep the shoes out of sight.

6. Identify underlying reasons for behaviour changes.
Try to establish if they have any underlying needs that they cannot express. For example, they could be showing these behaviour changes because they feel too warm or tired. They might also need a drink or use the toilet. If they seem uncomfortable, it could be a medical problem.

7. Keep up with social activities.
Most persons with dementia would benefit from physical or social activities regardless of the severity of their condition. Social activities ensure that they remain in contact with other people and offer a sense of well-being. Those at mild to moderate stages of dementia would enjoy being with family and friends in small gatherings as they would still be able to converse.

Recreational activities such as card games or hobbies could be enjoyable to them too. However, persons at a more advanced stage of dementia would more likely prefer a one-to-one interaction as they would need more visual and verbal cues.

8. Enjoy safe, outdoor activities.
Care needs to be taken to prevent falls when the person with dementia is walking in public spaces — steps, stairs, roads and crowded shopping malls — especially if they have osteoarthritis, heart problems or had a stroke previously.

Public spaces where there are even footpaths and seats available for rest would be ideal for them to visit. Some activities they could participate in include visits to neighbourhood parks and community gardens, tai chi/qigong with a community group, or the Memories Cafe or the Family of Wisdom programme organised by Dementia Singapore (formerly known as Alzheimer’s Disease Association).

Adapted from: HealthHub.sg

Tips for Conversations With Persons Living With Dementia

Face to face interaction

Approach the person from the front.

Attract the person’s attention.

Maintain eye contact.

Tone and volume of voice

Speak slowly and clearly.

Use a tone of voice that is gentle, calm, and reassuring.

Use positive and good-natured humour to lighten the mood.

Avoid using at a higher pitch and loud voice.

If the person living with dementia has hearing difficulties, consider encouraging them to use hearing aids, and use pictures/diagrams to help facilitate the conversation.

Conversation topics and activities

If you are having a chat with a person living with dementia, these are some suggestions for what you can do:

Talk about shared experiences: You can recount your experience about a certain event or memory. This may trigger memories in the person living with dementia.

Look at photographs together: You can look at photos from books and newspapers to get a conversation going.

Look at memorable items together: If the person living with dementia has items that are especially precious to them, you can look at them and talk about them.

Read together: If the person is able to read, you can ask them whether they would like to read a favourite book of theirs. You can also read their books to them and share your thoughts about them.

Listen to music together: You can play popular music or music that is special to them from an earlier period in their life, and talk about this music with them, mentioning the names of the musicians and the pieces of music. You can also sing or move to the music together.

Phrasing of sentences

Keep sentences simple, short, and direct.

Avoid lengthy conversations that require complex thinking. Break down tasks with clear, step-by-step instructions.

Use simple words that the person living with dementia can understand.

Ask questions one at a time as multiple questions can be overwhelming.

Ask close-ended questions answerable with a “yes” or “no.”

Ask, “Would you like some coffee?”

Avoid asking, “What would you like to drink?”

When providing the person choices, limit the number of choices to two.

Be patient

Allow the person living with dementia adequate time to respond. Do not interrupt or finish sentences unless they ask for help to complete a sentence.

If they do not respond, repeat yourself in a gentle, calm, and reassuring manner.

Take time to listen to what the person living with dementia feels, thinks, or needs.

Be supportive

Offering comfort and reassurance can encourage them to share their thoughts to you.

Sometimes, the emotions expressed are more important than what they say. Look for the intentions behind words or sounds. Observe their body language.

It is okay if you do not know what to do or say; your presence is the most important indication of support to the person living with dementia.

Treat the person living with dementia with dignity and respect

Avoid talking down or facing away as if they are not there.

Keep eye contact as much as possible and acknowledge your understanding of their expression and words.

Do not exclude them from conversations with others.

Adapted from: Communication Skills with Persons with Dementia by Khoo Teck Puat Hospital and Living with Dementia: A Resource Kit for Caregivers (Providing Care) by Agency for Integrated Care

Communicating with Persons Living with Dementia in End-of-Life Stages

Tips for interaction

⇒ Maintain eye contact as much as possible with the person living with dementia.

⇒ Talk about things of interest to them or reminisce about things from the past, even if you do not think they can follow what you are saying. They may respond to the tone of your voice and feel a level of connection with you even if they may not understand what you are saying.

⇒ Use appropriate physical contact such as holding hands or a hug to reassure them that you are there for them.

⇒ Take your time and look for non-verbal signals.

⇒ Non-verbal communication – gestures, body language, facial expression and touch – can help facilitate communication.

Visiting Relatives and Friends Who Live With Dementia

Understand Dementia
Understanding how dementia develops will allow you to better understand what your loved one is going through. It will help you to understand some of the behaviours or feelings your loved one is experiencing.

Always Introduce Yourself
Greet your loved one by introducing your name and how you are connected to them. Sometimes your loved one may have forgotten, and they may develop anxiety from trying to recall who you are.

Make the Visit Fun!
Make the visit fun by taking something with you: an old photo, a memento from a past trip together, or an item from olden days. Reading from a magazine or newspaper also helps to engage your loved one and gives both of you something to do together. Use music to lift your loved one’s mood. Music can create an atmosphere of relaxation or fun whether it is played from a CD or on an instrument. It can help your loved one recall past memories, or simply to have a good time!

Acknowledge Your Loved One’s Feelings
Have an open mind and be flexible: Your visit may not go according to how you have planned, but that is all right. Have an open mind on how your visit with your loved one goes, adapting to your loved one’s energy levels, mood, etc. Dementia can cause your loved one to experience feelings of anxiety, anger and agitation. Acknowledge how your loved one feels to provide some assurance.

Adapt Your Communication Style
Explore other methods of communication other than talking. Hold your loved one’s hand, give him/her a hug, a shoulder rub or hand massage to complement or replace conversation.

Communicate clearly by asking closed ended questions instead of open ended questions. Listen patiently and allow him/her time to respond. With dementia, your loved one’s ability to express himself/herself may be affected. Try not to finish his or her sentence. Instead, listen patiently as he/she speaks and searches for the right words.

Keep in Touch
Often, it is assumed that with memory loss, interaction with loved ones and friends holds little or no purpose. However, offering your loved one your time and presence helps to sustain their emotional wellbeing! Be comfortable with silence as it is not a bad thing. Savour each other’s presence and your time with each other.

How Not to Interact With Persons Living With Dementia

The following short film contains a skit with examples of how members of the public should not interact with a person living with dementia who appears to be lost in public.

Source: Health Promotion Board

The following video contains negative examples of how members of the public interact with a person who appears to have dementia and is lost when in different settings. It also provides alternative examples of how members of the public can help in the same situations by recognising the ABCDs of Dementia Progression.

Source: Dementia-Friendly Singapore

References

  1. Khoo Teck Puat Hospital. (2010). Communication Skills with Persons with Dementia. Retrieved November 21, 2019.
  2. Health Promotion Board (n.d.). How to Communicate With a Loved One With Dementia. HealthHub.sg. Retrieved May 3, 2021, from https://www.healthhub.sg/live-healthy/994/how-to-communicate-with-a-loved-one-with-dementia
  3. Agency for Integrated Care. (2018). Living with Dementia – A Resource Kit for Caregivers, Providing Care. https://www.aic.sg/resources/Documents/Brochures/Mental%20Health/4%20Books/Book%203%20-%20PROVIDING%20CARE.pdf
  4. Agency for Integrated Care. (2018). Living with Dementia – A Resource Kit for Caregivers, Planning Care. https://www.aic.sg/resources/Documents/Brochures/Mental%20Health/4%20Books/Book%202%20-%20PLANNING%20CARE.pdf

With the rising incidence and prevalence of dementia worldwide that is projected to continue, more efforts have been invested to address the needs of persons living with dementia and individuals around them. One such effort is the development of assessment tools and instruments in the field of dementia care. Some uses of the assessments include: measuring the progress of dementia-related impairments (cognitive, functional) or the effects of dementia treatments in clinical trials, and evaluating the impact of psychosocial interventions in enabling persons living with dementia to live well, amongst other assessments.1

Other than studying dementia assessment tools and instruments, researchers and clinicians also study the reliability and utility of the methods for validating and reporting dementia assessment tools and instruments. An ideal measure should be valid, reliable and practical to use. It should not use too much of the assessors’ and participants’ time.

In addition, as dementia may, from its earliest stages, affect cognition and language abilities, it is important to have both persons living with dementia and their proxies, such as family caregivers and care professionals, involved in the assessment process.2 All these factors should be taken into consideration when choosing an assessment or instrument to be used in dementia care and research.

Singapore’s Ministry of Health (MOH) has developed a set of Clinical Practice Guidelines on Dementia. These guidelines list a number of recommended assessment tools to be used for cognitive screening, ratings of behaviour changes, and assessment of functional status and of social issues for persons at risk of dementia, for the process of diagnosis, and for persons who have been diagnosed with dementia.3

In the following nine articles, studies of some existing measures in dementia care have been consolidated and organised according to the purposes, strengths and limitations, and/or psychometric properties of the measures. Embedded links to the original journal articles and assessments/instruments are included in these articles for your further reading. Click on any of the following documents to find out more about the assessment tools and instruments.

measuring
Cog-Asst-Screen-Tests
Stages-of-Dementia
Measures Daily Living
Pain Measures
measures-behaviour-changes
Dementia singapore
Dementia-Caregiving
Attitudes-Knowledge

References

  1. Burns, A., Lawlor, B., & Craig, S. (2002). Rating scales in old age psychiatry. The British Journal of Psychiatry, 180(2), 161–167. https://doi.org/10.1192/bjp.180.2.161
  2. Sheehan, B. (2012). Assessment scales in dementia. Therapeutic Advances in Neurological Disorders, 5(6), 348–358. https://doi.org/10.1177/1756285612455733
  3. Singapore Ministry of Health. (2013, July 10). Dementia: MOH Clinical Practice Guidelines 1/2013. Person-directed dementia care assessment tool. https://www.moh.gov.sg/docs/librariesprovider4/guidelines/dementia-10-jul-2013—booklet.pdf

The term “person-centred care”, as a frequently-used term and a developing area,1 does not have a single agreed definition. When loosely defined, it has been used to refer to philosophies of caring that include goals that range from an emphasis on the dignity of the person being cared for, treating this person as an individual, ensuring that care is organised around the person, to involving the person and their close kin in their own care planning.2

Many of the person-centred care approaches within the dementia care field today draw from the work of Tom Kitwood’s seminal work on dementia care. Kitwood highlights that personhood and the relationships between the persons in question and others around them are the core of person-centred dementia care. Instead of historically dominant thought paradigms which claim that only neurological processes cause dementia, Kitwood emphasises that the social environment of the persons being cared for is a critical determining factor for the wellbeing of these persons, and the presentation of their neuropsychological conditions, according to the Enriched Model of Dementia, which will be detailed later in this article. The social environment concerns the way in which the cared-for persons are perceived by the persons around them, and consequently, the kinds of relationships that these persons have with them.

Because of the central role has played in the development of theory, practice, and history of person-centred dementia care, this article will begin by exploring the influences upon his work. Following this, the article will briefly describe a few prominent approaches to person-centred care as practiced in the dementia care field today, namely the Spark of Life approach, the Eden Alternative, and Dawn Brooker’s VIPS approach.

A Short History of Person-Centred Care

The Influence of Carl Rogers’ Person-Centred Therapy

“Person-centred care”, as it is used in the field of dementia care, was drawn by Kitwood from the work of the American psychotherapist Carl Rogers,3 who developed and named the therapeutical approach known as person-centred therapy. Key characteristics of this approach include the assertions that people relating to the persons in question must be genuine (the condition of congruence), empathic, i.e., understand the client’s experience and perspective, and finally, have unconditional positive regard, that is, to approach the person with no judgment.4 These characteristics are apparent in the person-centred care approach of dementia care.

Enriched Model of Dementia

The development of a biopsychosocial model of health, promoted by the American psychiatrist George Engel in the late 1970s,5 and incorporated into Kitwood’s Enriched Model of dementia, also contributes to the concept of person-centred care of dementia. In this model, dementia is a condition that should be understood from a view that takes into account the combined effects of biological, psychological, and sociological factors on the development of the condition of a person with dementia in an integrated way.6

Prominent Person-Centred Dementia Care Approaches

Spark of Life Approach

The Spark of Life Approach, pioneered by Jane Verity, who had studied with Tom Kitwood, and co-developed by Hilary Lee, began as an interactive therapeutic social group programme called the Spark of Life Club Program, which aimed to provide an environment for persons with advanced dementia to experience rehabilitation and recover lost abilities. The programme was researched by Hilary Lee for her Master’s Degree, and further developed into a more extensive philosophy and programme for dementia care.7

Key points of focus of the Spark of Life approach are the quality of life of persons with dementia, and the belief that the recovery of abilities in a supportive and understanding social and emotional environment, termed as ‘rementia’, can occur.8

The Eden Alternative

The Eden Alternative, an approach towards person-centred care, was developed by geriatrician and nursing home physician William H. Thomas in 19919 response to what Thomas believed were the “three plagues of nursing homes: loneliness, helplessness, and boredom.”10 Its vision is described by principles known as the 10 Eden Alternative principles:

The 10 Eden Principles

1. The three plagues of loneliness, helplessness and boredom account for the bulk of suffering among our elders.
2. A fulfilling life involves creating a human habitat with people of all ages and abilities (including children), plants and animals.
3. The antidote to loneliness is companionship.
4. The antidote to helplessness is the opportunity to give care as well as receive care.
5. The antidote to boredom is variety and spontaneity.
6. All activity must be meaningful to the person.
7. Medical treatment is not the only way.
8. People need to be able to make decisions for themselves.
9. Culture change is a never ending journey.
10. Wise leadership from all of us is essential.11

The Eden Alternative approach was developed for persons living in nursing homes, and specifically, for older persons. This approach is, in effect, also practiced in dementia care settings because of the large overlap between older persons living in nursing homes and persons with dementia.

Eden principles place a large emphasis on ensuring companionship and activity. In reflection of this emphasis, Eden facilities usually feature engagement with animals, children and youths, and the larger community, which the nursing home residents are encouraged to interact and build relationships with. According to research, interactions with children, youths, and animals may have significant impacts on home residents’ loneliness and feelings of helplessness,12 while connecting them relationally to the community around them. These initiatives support the dignity and social connectedness of Eden facility residents.

The VIPS Perspective of Person-Centred Care

The psychologist Dawn Brooker’s approach to person-centred care in the dementia care context is defined as follows:

Person-centred care comprises four elements, which are

• V for Valuing: Valuing people with dementia and those who care for them
I for Individuals: Treating people as individuals
P for Perspective: Looking at the world from the perspective of the person with dementia
S for Social Environment: A positive social environment in which the person living with dementia can experience relative wellbeing

This is otherwise expressed by the formula “PCC (person-centred care) = V + I + P + S”.13

Each element of VIPS is comprised of several smaller indicators. For example, Valuing people can be indicated by how well everyone in a care team or organisation knows what the team stands for (Vision), and the extent to which systems are in place to ensure staff know they are valued as a precious resource (Human resources).14  View a full list of the indicators that describe each element.

Care Cultures

Culture, according to different definitions, refers to information acquired from other individuals through social learning, such as by imitation or communication, that can affect an individual’s behaviours, according to the psychologist Steven Heine,15 or a historically transmitted pattern of meanings embodied in symbols by which people communicate knowledge and attitudes, according to the anthropologist Clifford Geertz.16 In these definitions of culture, information is learnt from others and historically perpetuated.

In the context of an organisation, organisational culture can be defined as “the assumptions shared by members of an organisation, used in their daily practice, and reinforced through providing successful solutions to problems faced in the course of work”.17 This means that the culture of an organisation that cares for persons with dementia is socially transmitted across generations of staff. Organisational culture has implications on the way persons with dementia are cared for in the long run, since the way the organisation cares for care recipients is heavily influenced by its culture, which does not easily change.

Person-centred care is one such culture. It both influences the thoughts and actions of care teams in a systemic way, and is perpetuated by what care teams think and do. For an organisation’s culture to sustainably change towards a person-centred culture of care, everything that can potentially influence the day-to-day culture of care should be addressed with an eye on the long term.18 This includes the environment of the organisation, the values of different levels of organisational staff, the communication patterns between staff teams and between staff and the persons with dementia, amongst other factors.

Integrating Person-Centred Care Approaches With Local Approaches

It is also worth considering how existing cultural perceptions and worldviews in the place where person-centred care is being applied may affect the way person-centred care is received, and is integrated into care approaches, by persons being cared for, caregivers, organisations, and organisational staff. Each region, community, or organisation has a culture that differs slightly from others. In addition, in the Singapore context, organisational staff are from different cultural groups and nationalities. Studies have shown that a specific culture’s culture, context, and language can influence the adaptation of person-centred care related tools, such as the Person-centred Practice Inventory – Staff (PCPI-S).19, 20 This suggests that inter-cultural communication of person-centred concepts to organisational leaders and staff members needs to be done with an awareness of cross-cultural differences in order to ensure that there is both an accurate understanding of person-centred care, and consensus over how the organisation intends to proceed having understood this perspective of care.

Bringing Brooker’s VIPS person-centred care approach to dementia care into local contexts does not necessarily mean replicating a new model of care without continuing the care approaches inherent within an organisation’s culture and values already being practiced in that local context. Instead, care teams and organisations could consider their own vision and approach to care alongside the person-centred care approach, and decide the best course of action within a coherent value system.

Measures of Person-Centred Dementia Care

Read Tools for Dementia Practice & Research for more information regarding measures of person-centred care, such as the Dementia Care Mapping 8th Edition, the VIPS Assessment Tool, and other tools.

Strengths & Limitations of Person-Centred Dementia Care

A commitment to person-centred dementia care would require a consideration of its strengths, the evidence base for its efficacy in practice, and its challenges and limitations.

Empowerment of Persons With Dementia and Their Kin

A key strength of person-centred care is that it puts power in the hands of persons with dementia and their close kin. Apart from providing a moral imperative to care for persons with dementia by recognising the need to value their personhood, person-centred care approaches, by recognising the preferences, wishes, and unique identities of persons with dementia and their kin, also provides these persons with the power to shape their own care and their everyday lives21. In addition, though persons with dementia may not have the ability or legal power to make decisions that require a higher level of mental capacity, a social- and health-care system characterised by person-centred care would involve close kin, such as caregivers, trusted family members, or legal attorneys, in important decisions regarding their personal matters. This allows care systems to, rather than treating care recipients as impersonal objects to operate on, instead work alongside these recipients as empowered partners involved their own care.22

A Focus on Systemic, Organisation-Wide Changes

In addition to highlighting the general need to provide care that places care recipients at the centre of care services, person-centred care approaches have also articulated the need for making systemic changes to care organisations by changing their care cultures. This focus on changing care cultures raises the probability that an organisation’s implementation of a person-centred care approaches will be sustained in the long-term.

Furthermore, by emphasising the need to empower organisations’ management and staff to work together to deliver care, person-centred approaches are in general comprehensive in describing how personnel practices are an important intervention point in the effort to align organisational culture with person-centred care. This is especially so because management teams set organisational values and vision, and staff require the support of management teams to execute their care.23 This detailed discussion on how organisations should deliver care to care recipients is a strength of person-centred care approaches.

Literature and Evidence Base on Person-Centred Care Approaches

The literature on person-centred dementia care approaches is currently developing alongside the field of person-centred dementia care practice. Currently, studies on person-centred dementia care have shown support for the effectiveness of these approaches.

In a 2019 systematic review of organisational-level implementation of person-centred care found that the quality of life of care recipients can be increased, and neuropsychiatric symptoms reduced, when this approach is implemented at an organisation-wide level with full support from organisation leaders.24 Another study involving a systematic review and meta-analysis of person-centred dementia care living in long-term care facilities and homecare settings found that the approach is able to reduce agitation, neuropsychiatric symptoms, and depression, while improving quality of life, though the learning and skill development of care personnel is needed for care recipients’ quality of life to be improved, and for effects on receipients’ behavioural problems to be sustainable.25 Finally, a cross-sectional study conducted in 7 nursing homes in Singapore, published in 2021, concluded that the overall level of person-centred care was positively associated with better resident well-being.26

There is a growing body of literature on ways to measure person-centred dementia care, which in turn is facilitating the quality and quality of literature and evidence on person-centred dementia care. For more information on measures of person-centred dementia care, find out at Tools for Dementia Practice & Research.

Cultural Differences

A challenge that teams that attempt to advocate person-centred dementia care faces is that it has to consider, as suggested in the earlier “care cultures” section of this article, the local cultures of the groups which the person-centred care approach will work with. Person-centred care approaches have an inherent value system and philosophy which may have differences with the values and thinking that the organisations, personnel, care recipients, caregivers, and local community-at-large may espouse. Communication and dialogue between the person-centred care advocates and the local community is encouraged to agree on and articulate the values and plans that the local organisation itself decides to proceed with.

Working With Different Organisations and Parties to Deliver Care

A challenge in implementing person-centred care is the necessity of working with different parties who may not work to deliver care in a person-centred way. For example, when a person with dementia and their care team face a care system or care personnel who may not be familiar with the care recipient due to rapidly changing staff or staff attrition, or because different service providers may not communicate or collaborate sufficiently, the care recipient will lose out on care quality. Wider cultural awareness on person-centred care, and discussions on best practice approaches for collaboration between different organisations to deliver person-centred care, may be necessary to meet this challenge.

Resource Constraints

Person-centred care is costly, although a necessarily costly investment in the valued lives of persons with dementia. To provide this care, finite resources including manpower, the state of the environment including physical facilities, and funding will need to be considered.

Implementing Person-Centred Dementia Care: Person-Centred Care Planning

In order to implement quality person-centred dementia care for persons diagnosed with dementia, care plans are formulated.

Care plans are extensions of medical records that are written records articulating care goals and action plans. They are living documents, that is, they are routinely reviewed and updated by care recipients, their next-of-kin, caregivers, and care professionals. Care plans aim to facilitate care that is individualised for these persons, coordinated across care teams, and well-documented.

For more information on person-centred care planning, find out at Person-Centred Care Planning.

References

  1. The Health Foundation. (2016, January). Person-centred care made simple. https://www.health.org.uk/sites/default/files/PersonCentredCareMadeSimple.pdf
  2. Ibid.
  3. Brooker, D. (2004). What is person-centred care in dementia?. Reviews in clinical gerontology13(3), 215-222.
  4. Murdock, N. L. (2017). Theories of Counseling and Psychotherapy: A Case Approach (4th ed.). New York: Pearson.
  5. The Health Foundation. (2016, January). Person-centred care made simple.
  6. Brooker, D., and Latham, I. (2016). Person-centred Dementia Care: Making Services Better with the VIPS Framework (2nd ed.). Jessica Kingsley Publishers.
  7. History of the spark of life model of care. Retrieved February 22, 2021, from https://dementiacareinternational.com/history-spark-life-philosophy/
  8. Barback, J. (2014, March 10). Spark of life approach: is it the way to go? Healthcentral.nz. https://healthcentral.nz/spark-of-life-approach-is-it-the-way-to-go/
  9. Brune, K. (2011). Culture change in long term care services: Eden-Greenhouse-Aging in the community. Educational Gerontology37(6), 506-525.
  10. Thomas, W. H. (1996). Life worth living: How someone you love can still enjoy life in a nursing home: The Eden Alternative in action. Publisher: Vanderwyk & Burnham.
  11. Alzheimer’s WA. (n.d.). Models of Care. https://www.alzheimerswa.org.au/about-dementia/understanding-dementia-care/models-of-care/
  12. Brune, K. (2011). Culture change in long term care services: Eden-Greenhouse-Aging in the community. Educational Gerontology37(6), 506-525.
  13. Brooker, D., and Latham, I. (2016). Person-centred Dementia Care: Making Services Better with the VIPS Framework (2nd ed.). Jessica Kingsley Publishers.
  14. Ibid.
  15. Heine, S. J. (2010). Cultural psychology. In S. T. Fiske, D. T. Gilbert, & G. Lindzey (Eds.), Handbook of social psychology (p. 1423–1464). John Wiley & Sons, Inc. https://doi.org/10.1002/9780470561119.socpsy002037
  16. Geertz, C. (1973). The interpretation of cultures (Vol. 5019). Basic books.
  17. Brooker, D., and Latham, I. (2016). Person-centred Dementia Care: Making Services Better with the VIPS Framework (2nd ed.). Jessica Kingsley Publishers.
  18. Ibid.
  19. Balqis-Ali, N. Z., San Saw, P., Jailani, A. S., Fun, W. H., Saleh, N. M., Bahanuddin, T. P. Z. T., Sararaks, S., & Lee, S. W. H. (2021). Cross-cultural adaptation and exploratory factor analysis of the Person-centred Practice Inventory-Staff (PCPI-S) questionnaire among Malaysian primary healthcare providers. BMC Health Services Research21(1), 1-12.
  20. Bing-Jonsson, P. C., Slater, P., McCormack, B., & Fagerström, L. (2018). Norwegian translation, cultural adaption and testing of the Person-centred Practice Inventory–Staff (PCPI-S). BMC health services research18(1), 1-10.
  21. Poland, F., & Birt, L. (2016). The agentic person: shifting the focus of care.
  22. Pulvirenti, M., McMillan, J., & Lawn, S. (2014). Empowerment, patient centred care and self‐management. Health Expectations17(3), 303-310.
  23. Chenoweth, L., Stein-Parbury, J., Lapkin, S., Wang, A., Liu, Z., & Williams, A. (2019). Effects of person-centered care at the organisational-level for people with dementia. A systematic review. PloS one14(2), e0212686.
  24. Ibid.
  25. Kim, S. K., & Park, M. (2017). Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis. Clinical interventions in aging12, 381.
  26. Tew, C. W., Ong, S. P., Yap, P. L. K., Lim, A. Y. C., Luo, N., Koh, G. C. H., Ng., T.P., & Wee, S. L. (2021). QUALITY OF LIFE, PERSON-CENTRED CARE AND LIVED EXPERIENCES OF NURSING HOME RESIDENTS IN A DEVELOPED URBAN ASIAN COUNTRY: A CROSS-SECTIONAL STUDY. Jour Nursing Home Res7, 1-8.

In this topic, the importance of developing a person-centred care plan for persons living with dementia is emphasised. This page also summarises some of the best practices for a person-centred care planning process and the elements that a good care plan entails. Having these in place will assist care professionals to then deliver quality person-centred care for their clients or patients living with dementia.

What Is a Care Plan and Why Is It Important?

In health and social care, a care plan is typically used for an individual who receives care for different reasons. They might be hospital patients, and/or persons who use services for persons living with dementia, mental illness, or learning and development disability.

A care plan is usually a/an:

• Extension of a medical and health record;

• Written record (either electronic or paper-based) of the outcomes of a care planning process, where care professionals and recipients discuss and agree on an action plan to achieve a set of care goals that are of most concern to the needs and conditions of care recipients; and

• Living document that is used, reviewed and updated routinely (ranging from once daily to every few months) by the care recipients, care professionals and/or others (i.e., care recipients’ families).1,2

Care plans and care planning are essential as they serve the following purposes:

• Individualised/ Personalised Care: They provide overall directions and detail the approaches that care professionals should use or personalise to the unique, individual needs, diagnosis and conditions of a care recipient;

• Facilitate Continuity and Coordination of Care: They are means of communication on care information and delivery to facilitate continuity of care between different care professionals, across shifts, or even between two care settings. This helps to ensure that the care recipient continues to receive the same care regardless of the changes. Sometimes, the care interventions may also need to be carried out by two or more professionals and settings; and

• Encourage Documentation of Care: Care plans function as documentation which outlines care recipients’ needs, conditions, and interventions. This documentation functions as a helpful guide to a multidisciplinary care team, when the client/patient may require attention from team members with specialised skills at different points of time.2,3

A ‘gold standard’ care planning process should lead to the creation of a care plan, which in turn serves as a foundation and guide that feeds back into ongoing care planning and implementation.1 Care plans are used in many healthcare systems all over the world, and each country may have its own set of requirements for the development of care plans.1

Care plans for different mental conditions may look different, since the steps taken to address different conditions focus on different issues and strategies to address them. For example, care plans for individuals who suffer from chronic asthma are focused on daily management and step-up treatments in case of emergency situations and/or deterioration, where urgent medical interventions are needed.4 On the other hand, care plans for severe mental health conditions consist of both needs assessments and action plans, which focus more on the management of crisis situations should they occur.5

Care Plans in Singapore

In Singapore, the Ministry of Health (MOH) has developed service requirements and standards for centre-based services and nursing homes to follow when creating their respective care plans for clients and residents, including those living with dementia. These documents state that:

1. Upon admission, preliminary assessments and care plans should be administered and developed, respectively;
2. Clients’/residents’ assessments, care needs, goals of care, interventions, outcomes, and evaluation of care should be documented;
3. Ongoing comprehensive assessments are necessary; and
4. Care plans should be routinely evaluated and reviewed.

Refer to the Ministry of Health’s websites for the latest information on the requirements for care planning in Intermediate and Long-Term Care Services (i.e., Centre-Based Care Services, Home Care Services, Nursing Homes, etc.):

Home and Centre-Based Care Service Requirements
Intermediate and Long Term Care Guidelines

Person-Centred Care Planning for Persons Living With Dementia

As dementia is progressive, a person living with dementia will experience a worsening of symptoms, as well as a deterioration of their abilities over time. However, the most disabling effect of dementia is not the cognitive and functional impairments, but the implications on one’s self and personhood.6 With continual cognitive and functional decline, it becomes increasingly difficult for a person living with dementia to communicate about their needs and preferences. Thus, it may be easier for others to take control over their life and care. As a result, they may often be perceived as diminished beings, and be treated in non-humane ways, and as though they are no longer human beings.7

Professor Thomas Kitwood, the author of “Dementia Reconsidered: The Person Comes First”, advocated for the position that personhood consists of more than a person’s cognitive and functional abilities.8 Every person is a unique individual who has inherent dignity, including those living with dementia. This dignity remains with them throughout the course of their condition. Despite their diagnosis, persons living with dementia still have their own unique strengths, beliefs, values, life stories, personalities, preferences and needs. Furthermore, dementia manifests itself differently in every person living with dementia as well – no two persons develop the same exact symptoms.8

Each person should be treated with the respect a person is due. Similarly, they should be accorded with opportunities to interact positively with their physical and social environments, and to experience a good quality of life. It is essential for others around a person living with dementia to recognise that their personhood continues and find ways to uphold this personhood, even as their condition progresses. This person takes the uniqueness of each person, including their needs, wishes, perspectives, and preferences, into account. These ideas form the basis of person-centred dementia care.6 Additionally, as discussed in the article titled “Person-Centred Dementia Care“, provision of care with a person-centred approach brings about more positive effects than limitations not only to persons living with dementia, but also to care professionals and the care culture in the organisations involved. An optimal person-centred care plan lays the foundation for the delivery of good quality dementia care.9

When a person’s dementia progresses, it becomes increasingly challenging to discover their needs, wishes, perspectives, and preferences. However, person-centred care should continue to be carried out throughout the person’s experience of dementia, and there are ways of doing so.

The care planning journey may begin upon being diagnosed with dementia. As there is no “one size fits all” model of care, the key to a good person-centred dementia care plan should not just focus on effective management of dementia symptoms or activity engagement, but to build and tailor a unique plan around each person living with dementia. It is important for care professionals to take the time and effort to gather all the available information about the whole person in order to develop a comprehensive and individualized care plan for them. A well-researched and formulated care plan can serve as an important aid to care partners (care professionals and family members) to respect the individual living with dementia, and ensure quality person-centred care is delivered. It can also help everyone around to build better relationships with and understand the person as a whole, and use it to meet their needs and desires.9

The list below is a consolidation of recommendations from several requirements and toolkits, on some best practices employed during a good person-centred care planning process for individuals living with dementia:9,10

Individualised Care

A good care plan for individuals living with dementia should look at the whole person, and comprise details on all areas of the individual’s life. It should focus not only on the person’s physical health aspects, but also on their emotional and social aspects as well. More importantly, an optimal care plan will include how staff can effectively address this wide range of the person’s needs and preferences.

Additionally, the care plan should emphasise a person’s strengths and abilities rather than disabilities, and how staff can promote their best interests and strengths. In this way, this person-centred care plan is more likely to be translated into good care practices, which can support and maintain a person’s independence and autonomy despite their dementia.

Interdisciplinary Team Approach

Mutually beneficial relationships and good communication between persons with dementia and their care partners (family caregivers and care professionals) are crucial in building a comprehensive person-centred dementia care plan. It is important for all the stakeholders to be meaningfully and fully involved, and provide their inputs throughout a care planning journey. The initial and ongoing collaboration between the person living with dementia, their family members and friends, and the care team is key to delivering quality person-centred care outcomes. A good care plan will emphasise teamwork by all stakeholders and on everyone’s responsibilities in putting the plans to practice.

As persons living with dementia know themselves best and are experts in their own health and well-being, they should be treated as equal and active partners in the creation and review process of their care plans. Similarly, they should be placed at the centre of the decision-making process and encouraged to participate in decisions involving areas of their care and intervention strategies. In this way, care plans can then be personalised to their individual strengths, preferences, values and cultures. This also ensures that the care solutions and interventions developed can successfully support their health and well-being and best meet their needs.11

Family members and/or friends are likely to have had an extended period of sharing personal experiences together with the person living with dementia before their diagnosis. They may thus be able to contribute much useful information about the person, especially when they are in the advanced stage of dementia and have difficulties communicating. Understanding how the dynamics with these family members/friends have developed over the years helps care professionals to gain a more holistic picture of the person living with dementia. In addition, family members and friends who are caregivers also require support as they carry out caregiving responsibilities. Their wishes should be taken into consideration during care planning too. Being aware of and understanding the goals of care can allow family members to support care professionals to achieve their goals with the person living with dementia.

Care Professionals: Persons living with dementia can have multiple needs and care goals that require attention and support from a team of various care professionals with different sets of specialised skills. Each team member may be responsible for a specific care goal, or be required to exchange information with one another while working together to deliver care. Furthermore, when persons living with dementia are unable to speak, the care team needs to collaborate to understand the person’s needs and preferences in order to develop an effective care plan.

Cyclic Process

As mentioned earlier, a ‘gold standard’ of the care planning process should result in the creation of a care plan, which feeds back into an ongoing care planning and implementation process.

Individuals’ likes and dislikes can change over time, and so do those of persons living with dementia. Care professionals have to be flexible in meeting these changing preferences and needs, and frequently plan for alternative scenarios and potential changes. To adapt to these changes, a person-centered care plan for persons living with dementia has to function as a living document that is updated as often as the person’s needs and preferences change. Similarly, having a completed, accurate, and up-to-date profile would enable both persons living with dementia, as well as their care partners to effectively participate in care planning and decision-making, in order to receive the most appropriate care.

To achieve the above, it is recommended that an optimal person-centred care plan should include a cyclical process. Hence, after the creation of the care plan, this plan should also be routinely reviewed and modified. It should also be updated whenever there is a change to a person’s demeanour. This involves a routine gathering, dissemination and re-assessment of information about the person living with dementia. This will subsequently enable the care team to continually develop and implement updated care solutions and interventions for them. Having the above proposed ongoing cyclic process in place will further ensure that quality person-centered dementia care, well-coordinated, and readily provided. It also ensures continuity of care, since care professionals who take over the care of the person living with dementia have access to the same set of documented information as previous care professionals working with the person. It is therefore beneficial to formalise this system, to facilitate the operationalisation of this cyclical process.

First Person Language

A person-centred care plan should provide a voice for the person living with dementia, especially at the later stages when they experience difficulties in language and communication. Hence, their perspectives should be incorporated as much as possible. Writing the care plan in first person (as if the person is speaking), with personal statements and information included, may enhance the experience of the person living with dementia, by presenting to care partners a more personal account of who they are. Some examples of these personal details include the preferred name that they would like others to use, and their strengths and interests. A good person-centred care plan that incorporates the elements recommended above can be helpful to care professionals, especially for those who are new to the person living with dementia, in understanding them as a whole person. Care professionals referring to this care plan will know what is expected of them when working with the individual too.8,12

Comprehensive & Holistic Assessments

At the beginning of a person-centred care planning process, a person living with dementia and/or their family has to work together with care professionals to complete an initial holistic assessment around him/her, evaluating all areas related to his/her well-being and health. The findings can then be translated and included into an informative dementia care plan.13 Subsequently, this evidence-based care plan is constantly updated according to findings which are regularly gathered from ongoing, comprehensive assessments, including evaluation results of the impact of care interventions and solutions.11

The following are some examples of information collected through assessments that allow care professionals to learn about the holistic health and well-being of a person living with dementia:

• Personal information from both past and present such as:

⇒ Life stories,
⇒ Physical health and abilities in activities of daily living,
⇒ Strengths and interests,
⇒ Preferences, likes and dislikes,
⇒ Personalities,
⇒ Lifestyles,
⇒ Beliefs and values, and
⇒ Mood, behavior and cognition;

• Physical and social environment;
• Plans for end-of-life care; and
• Needs, including physical, psychological, spiritual and social needs, etc.

These assessments’ results can be included in the person’s dementia care plan, which will then be able to support care professionals to:

• Review and set realistic goals that promote the person’s health and quality of life;
• Evaluate the outcomes and impact of care solutions and interventions on attaining the person’s care goals; and
• Enhance existing or develop new interventions that appropriately meet the person’s needs, align with their preferences, and maintain their strengths.

Read further on the various assessments that care professionals may use to measure and gather information on the multiple aspects and needs of persons living with dementia.

Elements to Include in a Person-Centred Care Plan For Persons Living With Dementia

This section lists down some examples of information to gather and document under the multiple components that can be incorporated in a person-centred dementia care plan.

Life History

• A description of the person
• Name and the preferred name to be called by others
• Date of birth
• Genogram and ecomap
• Language(s) spoken/previously spoken, preferred language(s)
• Health and social care organisations involved in person’s care
• Significant life events, such as:

⇒ Life and death events
⇒ Marriage
⇒ Relationship issues and divorce
⇒ Education history
⇒ Events in life of family and friends
⇒ Life in different neighbourhoods, cities, or countries
⇒ Cultural or religious events important to the individual
⇒ Work history and changes in occupation
⇒ Both proud and difficult times
⇒ Traumas

• When do memories and anniversaries of these occasions affect the person’s emotions, behaviour, and cognition?
• How have these past experiences changed their life and affect how they make sense of what is happening in the present?

Personality, Lifestyle, Likes & Dislikes, Beliefs Systems

Personality
Lifestyle
Strengths and abilities
Personal possessions for everyday use
Routines – daily, weekly, monthly, and yearly
Likes and dislikes
Things that he/she enjoys and does not enjoy
Preferences and needs
Religious or spiritual beliefs

Cultural background
Financial habits
Stressors that can trigger them or push their boundaries
Coping system or values during stressful situations
How do they view and interpret things in the world and everything happening around them?
Preferred daily routine, before and after being diagnosed with dementia
Wishes that they had hoped to fulfill by the end of life

Cognitive Abilities & Impairments

• Dementia Diagnosis – The type and stage of dementia
• The effects of dementia have on cognitive abilities, such as:

⇒ Memory
⇒ Orientation to time, place and people
⇒ Processing information
⇒ Language
⇒ Understanding spoken and written language
⇒ Planning a course of action
⇒ Abstract thinking
⇒ How do these impairments affect a person’s abilities to carry out his/her activities of daily living (for e.g., shopping or dressing)?

• Any behavior changes associated with dementia
• Remaining cognitive abilities that are retained, such as:

⇒ Engaging in humour
⇒ Experiencing emotion
⇒ Exploring the environment
⇒ Seek meaning

Health Conditions

Co-occurring health conditions, such as:

• High blood pressure
• Heart diseases
• Acute confusional states from physical conditions, like infections, constipation, dehydration, malnutrition, which persons with dementia may be more susceptible to
• Pain
• Sensory impairments
• Safety and areas of high risk

• Mobility
• Toileting
• Eating patterns, dietary restrictions

Note: Some persons with dementia may have difficulties articulating changes to their health due to memory and language problems. Their care partners must thus be vigilant to consider that it is an underlying physical health condition affecting a person’s abilities rather than his/her dementia – not every change is attributed to dementia.

Relationships With Others

• Next-of-kin
• Caregiver(s) and previous caregivers
• Relationships that are supportive and damaging to them – family dynamics and situations, friendships, or familiar figures in the community or care environment (This is related to the genogram/ecogram – refer to the “life history” section above)

• Conflict resolution strategies between persons with dementia and their care partners (for e.g., any actions that may cause conflict and the patient’s views on how to resolve conflict most effectively)
• Social circumstances
• Relationships with social groups and organisations
• Preferred environment

Financial, Legal History & Status

• Citizenship and immigration status
• Whether this person have a donee under a lasting power of attorney, or a deputy
• Whether this person has a will
• Advance Care Plan

• Advance Medical Directive
• Financial and legal wishes
• Legal contacts
• Contact of representative social worker

Goals of Care & Interventions

Both short- and long-term goals, and the action plans to achieve them:

• As much as possible, providing a detailed description of the current status, functioning and/or unmet needs of the above components, will be ideal.

• From the descriptions, the person living with dementia or his/her family and the care team will then be able to:

⇒ Set realistic goals and outcomes, including the dates for completion of each goal;
⇒ Plan the therapeutic interventions and activities to meet the goals and needs; and
⇒ Inform the responsible discipline(s) and/or staff to follow up and monitor.

Additional Resources

Below is a consolidated list of resources which may serve as a good starting point for care professionals, and health and social care institutions in the development of a person-centred care planning process and care plan for persons living with dementia.

Best Practice Guidelines Underpinning Person-Centred Care Planning Process

The Wisconsin Department of Health Services, Bureau of Aging and Disability Resources in the United States has developed a set of guidelines for long term care settings to identify key strengths and potential areas for improvement in the following nine areas, including care plans:
1. Environment
2. Language and communication
3. Care Plans
4. Activities
5. Problem solving processes for working with behavioural communication
6. Communication and leadership
7. Team structure and roles
8. Staff knowledge and training
9. Policies and procedures


The Alzheimer’s Association created Dementia Care Practice Recommendations derived from a review of research literature, including Care Planning. These recommendations can be applied to all settings, types, and stages of dementia. The target audience for these recommendations are care professionals.

• Person-Centred Care
• Detection and Diagnosis
Person-Cented Assessment and Care Planning (Read more about this set of recommendations here.)
• Information, Education, and Support for Individuals Living with Dementia and their Caregivers
• Care of Behavioral and Psychological Symptoms of Dementia, and Support for Activities of Daily Living
• Staffing
• Supportive and Therapeutic Environments
• Transitions in Care


The National Health Service of England developed a guide for primary care professionals and physicians that is designed to standardise and improve the care planning process to support persons living with dementia, by highlighting some of the good practices.


This guide developed by the Mental Welfare Commission for Scotland aims to help care professionals working in health and social care settings that serve persons and their caregivers who use dementia, mental health and learning disability services. This guide talks about the underlying principles of care planning and provides best practice suggestions for developing person-centred care plans.


Social Care Institute for Excellence advocates for the position that a good person-centred care plan is essential in protecting a person’s basic human rights, freedom and choices when individuals are at their most vulnerable. This resource demonstrates how the care planning process can embed and comply with the principles of the United Kingdom’s Mental Capacity Act to protect individuals who lack or have fluctuating capacity to make decisions, especially when it comes to their own care, life, and death. This report emphasises that even when a person lacks or has fluctuating capacity, the care plan in place should maximize their freedom to make decisions about their own care, and help to make decisions in their best interest and protect their human rights even when they are deprived of their liberty.

Toolkits to Help Gather Information on All Aspects of a Person’s Life and Develop a Person-Centred Care Plan

Enriched Care Planning for People with Dementia: A Good Practice Guide for Delivering Person-Centered Care

May, Edwards & Brooker (2009) shows in detail how to plan care by taking into account the perspectives of a person living with dementia. It presents and provides:

• Using the Enriched Model of Dementia8 to develop an enriched care plan;
• The five stages of enriched care planning;
• How communication is key to the ongoing process of profiling a person living with dementia
• An Enriched Profile and Care Plan template to document all the information gathered about a person living with dementia, and to plan and develop the person’s needs and care partners’ person-centred follow-up actions and interventions;
• On top of the Enriched Profile and Care Plan template, this book offers additional profiling templates which lists out questions that care professionals may use to ask the person living with dementia and/or their loved ones, in order to gather all the information to profile the person. These templates include:

⇒ Life story profiling template
⇒ Lifestyle and future wishes profiling template
⇒ Personality profiling template
⇒ Health profiling template
⇒ Capacity for doing profiling template
⇒ Cognitive ability profiling template
⇒ Life at the moment profiling template

• Care professionals can photocopy these templates to use in their work; and
• Real case examples to illustrate the care planning process.


The South West Dementia Partnership from the United Kingdom developed two templates of person-centred support plan for persons living with dementia.

This support plan also draws on the work and Enriched Model of Professor Tom Kitwood. It again emphasises the importance of knowing the person living with dementia as a whole, taking into account their perspectives, seeing the world from their point of view, and respecting their wishes and needs when completing the support plan with them. The guiding principle of this plan is that it should enable and support the independence and autonomy of a person living with dementia as much as possible.13

These templates are free for download. Care professionals may use them to obtain information from the person through discussion or close observation.

1. A top sheet to provide care professionals a quick reference of who the person living with dementia is – preferred name, background, likes and dislikes, and needs, etc.; and

2. A support plan for care professionals to record the following 6 aspects of the life of a person living with dementia in detail:

• Safety
• Cognitive Ability
• Biography
• Personality
• Physical Health
• Environment


The Alzheimer’s Society created a leaflet titled ‘This is me’ that care professionals can use in any setting (at home, in hospitals, or long-term care settings) to gather and record the following information about a person, in order to better understand who the person is and provide the care that is individualised to their needs:

• Cultural and family background
• Important events, people and places from their life
• Preferences, routines and habits
• Communication and mobility

References

  1. Burt, J., Rick, J., Blakeman, T., Protheroe, J., Roland, M., & Bower, P. (2014). Care plans and care planning in long-term conditions: a conceptual model. Primary health care research & development, 15(4), 342-354. https://doi.org/10.1017/S1463423613000327.
  2. Mental Welfare Commission for Scotland. (2019). Person centred care plans: Good practice guide. https://www.mwcscot.org.uk/sites/default/files/2019-08/PersonCentredCarePlans_GoodPracticeGuide_August2019_0.pdf
  3. LeadingAge Center for Aging Services Technologies. (2016). Shared care planning and coordination for long-term and post-acute care: A primer and provider selection guide 2016 [White paper]. https://www.leadingage.org/sites/default/files/Shared_Care_Planning_and_Coordination_Whitepaper.pdf
  4. Gibson, P. G., & Powell, H. (2004). Written action plans for asthma: An evidence-based review of the key components. Thorax, 59(2), 94-99. doi: 10.1136/thorax.2003.011858.
  5. Goodwin, N., & Lawton-Smith, S. (2010). Integrating care for people with mental illness: The care programme approach in England and its implications for long-term conditions management. International journal of integrated care, 10, https://doi.org/10.5334/ijic.516
  6. Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being. Ageing and Society, 12(3), 269-287. https://doi.org/10.1017/S0144686X0000502X
  7. Fazio, S. (2008). The enduring self in people with Alzheimer’s: Getting to the heart of individualized care. Baltimore, MD: Health Professions Press.
  8. Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.
  9. Commission for Social Care Inspection. (2008). See me, not just the dementia: Understanding people’s experiences of living in a care home. https://staging.dementiaroadmap.info/wp-content/uploads/seemenotjustthedementia.pdf
  10. The Wisconsin Department of Health Services Bureau of Aging and Disability Resources. (2014). Person-directed dementia care assessment tool: A guide for creating quality of life and successfully refocusing behavior for people with Alzheimer’s disease and related dementia in long term care settings. https://www.dhs.wisconsin.gov/publications/p2/p20084.pdf
  11. National Health Service. (n.d.). Personalised care and support plan. https://www.england.nhs.uk/ourwork/patient-participation/patient-centred/planning/
  12. Allen, K. (2020, January 16). Developing a dementia care plan. BrightFocus Foundation. https://www.brightfocus.org/alzheimers/article/developing-dementia-care-plan
  13. Care Fit for VIPS Partnership. (n.d.). Care Fit for VIPS. https://www.carefitforvips.co.uk/
  14. May, H., Edwards, P., & Brooker, D. (2009). Enriched care planning for people with dementia. London and Philadelphia: Jessica Kingsley Publishers.
  15. South West Dementia Partnership. (2010). Person centred support plan for people with dementia. https://dementiapartnerships.com/wp-content/uploads/sites/2/person_centred_dementia_support_plan_A4.pdf

It can be difficult to accept a dementia diagnosis, and understanding the reason behind the denial is important to coming up with strategies to help your client.

Receiving a dementia diagnosis can be harrowing—it’s normal for the person who has been diagnosed to feel a range of negative emotions, from sadness to frustration, or even outright denial.

Continued denial can pose problems when your client refuses to accept help in future, or continues activities like driving even when it has become unsafe for them to do so. The refusal to acknowledge that they are experiencing memory or cognitive difficulties could sometimes be due to fear, or a genuine inability to understand that there is a problem. It is important to identify the reason why your client is denying that they have dementia so that you know how to tackle the problem.

Anosognosia

In some cases, your client’s struggle to acknowledge their condition does not stem from an active effort to deny the signs, but rather is due to an inability to understand that there is an impairment. Known as anosognosia, changes in the brain mean that the individual truly believes that there is nothing wrong with them. This can be frustrating to deal with as a care professional, but it is important that you acknowledge that this is not your client’s or anyone’s fault, and accept it for what it is.

With anosognosia, no amount of evidence will convince your client to accept their diagnosis. Instead, you will need to come up with care strategies working around this. As long as it does not pose a safety issue, it is okay to let them keep helping out around the house or their day activity centre.

If you believe that your client has anosognosia, it is important that the psychologist working with your client is consulted to ensure he/she gets a proper diagnosis. Medical professionals working with your client will also be able to better advise on how to proceed in such situations.

Fear

Denial of a dementia diagnosis often stems from fear—there’s just something about accepting the condition that makes it seem more real.

Right after the person has received their diagnosis, give them some time and space to think about it, and how they want to approach the situation or proceed. Do give them some time to speak to their loved ones and caregivers too. However, if they continue to deny their diagnosis, do be patient and continue to support them.

One of the things you can do is to find out more about the dementia support groups or therapies run by Dementia Singapore or other organisations, and encourage your clients or caregivers to try attending them. If caregivers and your clients attending these sessions with caregivers and other people with dementia, they may be able to see how such persons are still capable of living meaningful lives and having fun. This can be helpful in assuaging fears they have and allow them to come to terms with their diagnosis.

It is also important to stay calm and supportive. Persons with dementia can live full and fulfilling lives with your support, especially at the early stages. Check out the stories of dementia advocates from Dementia Singapore’s Voices For Hope programme, and other inspiring persons with dementia like Kate Swaffer and George Chong, who are embodiments of the fact that life does not come to and end because of a dementia diagnosis; rather, it is a new adventure.

How Can I Encourage Someone to Seek Help for a Dementia Diagnosis?

Source: Dementia-Friendly Singapore

Undernutrition and weight loss are prevalent issues worldwide amongst persons living with dementia, often worsening as dementia progresses. 20 to 45% of persons living with dementia living in the community (outside institutions such as nursing homes) experience significant weight loss over a one-year period, while up to 50% of those residing in care homes have inadequate food intake.1 Consequences accompanying undernutrition and weight loss problems typically include frailty, poor skin health, increased rates of falls, hospitalisations, and mortality.1

The underlying reasons for undernutrition and weight loss in dementia are complex, multifactorial, and remain unclear. Declining cognitive function, changes in the brain’s central regulation of appetite, behaviour changes, and distractions in the environment may all play a role in reduced appetite, forgetting how to chew and swallow, and/or disrupted eating behaviour.1

Caregivers and care professionals supporting a person living with dementia should look into curbing undernutrition and weight loss issues, which can be avoided. Some examples of interventions include making improvements to the eating environment, tableware and utensils, and providing an adequate variety of food.

References

  1. Maëlenn, G., Martin, P., & Prina, M. (2014, February 11). Nutrition and dementia. Alzheimer’s Disease International. https://www.alzint.org/u/nutrition-and-dementia.pdf

As dementia progresses, a person may lose weight and suffer from undernutrition due to reduced appetite, declining cognitive function and behavioural changes.

Eating a balanced diet and drinking sufficient fluids are important to maintain physical and mental well-being. Any physical illness can make a difference to a person’s ability to cope. It may also make them confused or forgetful.

Healthy Eating

Source: Agency for Integrated Care

Today, there has been no clear and consistent information on dietary factors that may increase or decrease the risk for the onset of dementia. However, adopting a Mediterranean diet may lower the risk of cognitive decline and dementia. This means eating higher proportions of grains, fruits, fish and vegetables.

Eating Well

Eating a well-balanced nutritious diet is important for overall health.

The key to the ideal meal for seniors or persons living with dementia is not necessarily providing a special diet, but providing variety, balance and moderation. As they tend to eat less, they will require more vitamins and minerals to support their diets.

The Ideal Meal

dementiahub

How Much to Eat?

The Ideal Plate

Drinking Enough Fluid

The fluid requirements for seniors are similar to younger adults’. Seniors, however, tend to drink less than what their bodies need for a number of reasons:

• With age, the body loses its ability to detect thirst.
• Some seniors also suffer from poor memory, immobility, or illness — all of which can result in decreased fluid intake.
• In addition, certain medications can also interfere with feelings of hydration and/or the thirst mechanism.

Dehydration can be a serious health problem in seniors as it can be associated with other illnesses. It is associated with increased risk of falls, urinary tract infections, dental disease, bronchopulmonary disorders (i.e. respiratory disorders), kidney stones, cancer, constipation, and impaired cognitive function.

Prevent dehydration by providing a person living with dementia with adequate fluids throughout the day.

Tips to increase fluid intake:

• Offer water frequently throughout the day and at mealtimes.
• Offer help to those who cannot drink independently.
• Offer barley, milk, soy milk, tea, coffee, juice, juicy fruits and soups for variety.

How Can You Improve the Eating Environment?

While it is essential to pay attention to the nutritional aspects of a meal by providing regular, healthy and balanced meals, another important aspect of meals for persons living with dementia is the eating environment. As eating is a social activity, creating a comfortable dining atmosphere can help boost the appetite of a person living with dementia.

Some tips on creating a comfortable eating environment:

• Provide opportunities to eat together with others, but be mindful of group size. Too large a group can get noisy and distracting.
• Reduce unnecessary distractions (e.g. TV, household chores) unrelated to eating.
• Ensure that there is a selection of various foods.
• The colours of the food, plate, and table should be different and contrasting.
• Avoid the use of patterned plates to prevent confusion.

How Can You Improve the Appetite of a Person Living With Dementia?

We are aware of all the good and nutritious foods like walnuts and green leafy vegetables that persons living with dementia need to keep their brain health in the best possible condition. However, what if persons living with dementia refuse to eat? For most people without the condition, eating and having our meals promptly happens most naturally.

Singaporeans are known to live to eat, some going beyond the recommended three square meals a day with ease. For persons living with dementia, mealtimes are not so straightforward.

Due to problems with chewing, swallowing or digesting, eating sometimes becomes a difficult chore. With their diminished sense of taste and smell, food that was once delicious may also lose their allure, leading to some seniors losing interest in eating. Often, the effects of memory loss may also confuse them into thinking they have already eaten, resulting in them eating less. If a person living with dementia is on medication, some prescriptions can also affect appetite and increase the likelihood of constipation, making their eating and digesting process more difficult.

In the process of caring for someone living with dementia, it can get frustrating when getting them to tuck in to a meal. These are some tips that may ease the process:

• Let them choose what they want to eat.
• Provide regular snacks or small meals rather than setting designated mealtimes.
• Make the look and smell of the food appealing and appetising.
• Do not overload the plate with too much food. Small and regular portions work best.
• Use brightly-coloured plates to help make eating interesting and distinguish food better.
• Encourage the person living with dementia to get involved with mealtimes, such as asking them to help in preparing the food or laying the table.
• Maintain eye contact with them during mealtimes, and continuously guide them back their to eating when they pause.
• Invite familiar people to join the meal and provide company. However, minimise conversations during mealtimes, as they may be too over-stimulated or distracted to finish their meal.

Downloadable Resources

The following resource contain bite-sized information on Improving Eating Environment & Appetite that you may download and/ or print:

Click on the image below to download in English or select another language.

Information on Dementia, and How It Affects Eating and Drinking

Food for Thought: Live Well, Eat Well, Think Well

Recipe cards were developed in collaboration between the Agency for Integrated Care (AIC) and the dieticians from Khoo Teck Puat Hospital to encourage seniors to adopt a diet that promotes brain health and healthy living.

These recipes have been adapted from diets which have been researched upon, such as the Mediterranean and Okinawan diets. The recipes were further localised by running focus group sessions with seniors to discover their food preferences.

The guiding principles for the recipe cards are to find suitable, local ingredients, and to create healthy recipes that are also tasty and easy to prepare. Every recipe has eight ingredients or fewer, and have at most eight preparatory steps.

Downloadable Resources

The following resources contain bite-sized information on Food Recipes that you may download and/ or print:

Click on the images below to download in English or select another language.

Food for Thought – Eat Well, Live Well, Think Well Recipes (Set 1)

Food for Thought – Eat Well, Live Well, Think Well Recipes (Set 2)

Institutions and organisations around the world have developed booklets and guides to support care partners of persons living with dementia, by addressing matters related to eating, diets and nutrition. Here are some of these booklets and guides:

1. The Alzheimer’s Disease International published a report in 2014 titled Nutrition and Dementia , which investigated how a healthy diet and the right nutrition can improve the lives of persons living with dementia. The publication features:

• Dietary factors across the life course that might increase or decrease the risk of onset of dementia in later life;
• Relationship between dietary nutrients and dementia prevention;
• Recommendations on the actions to take in order to improve the nutrition of persons living with dementia; and
• The need for more research on nutrition and dementia.

2. The Alzheimer Society of Ireland developed a booklet titled Eating Well with Dementia which provides information to support family caregivers in:

• Understanding how dementia can affect a person’s appetite and experience with food;
• Meeting the nutritional needs of a person with dementia;
• Encouraging a person with dementia to enjoy and be involved in meal preparation and mealtimes; and
• Dealing with weight loss, weight gain and other issues that can emerge.

3. The Ministry of Health of Israel has also created a guide titled Eating and Living With Dignity for care professionals and family caregivers of persons with dementia. This guide provides information, tips, and recommendations addressing the following in persons with dementia, such as:

• Difficulties with eating and choosing food;
• Constipation problems;
• Changes in eating and swallowing as dementia progresses; and
• Maintaining health nutrition.

What Are Recreational Activities?

Recreational activities are activities that people participate in for leisure. These are activities that are meant to engage persons living with dementia and are not specifically intended to meet therapeutic outcomes.1

Recreational activities differ from activities done for the purpose of therapeutic outcomes, such as activities done as therapeutic activities or psychosocial interventions. These non-recreational activities aim to meet therapeutic goals, such as the improvement of cognitive or emotional conditions, and tend to be more structured.

Recreational activities, therapeutic activities, and psychosocial interventions complement each other in improving and maintaining the wellbeing of a person living with dementia.

Types of Recreational Activities

There are many kinds of recreational activities. One list of recreational activities by the International Classification of Functioning, Disability and Health (ICF) by the World Health Organisation (WHO)2 is as follows:

Play

Engaging in games with rules or unstructured or unorganized games and spontaneous recreation, such as playing chess or cards or children’s play.

Sports

Engaging in competitive and informally or formally organised games or athletic events, performed alone or in a group, such as bowling, gymnastics or soccer.

Arts & Culture

Engaging in, or appreciating fine arts or cultural events. Examples include going to the theatre, cinema, museum or art gallery, or acting in a play, reading, being read to, dancing, singing or playing a musical instrument for enjoyment.

Crafts

Engaging in handicrafts, such as pottery or knitting.

Hobbies

Engaging in pastimes such as stamp collecting and antique appreciation.

Socialising

Engaging in informal or casual gatherings with others, such as visiting friends or relatives or meeting informally in public places.

Other recreation and leisure

Other recreational activities

There are many other possible ways of categorising recreational activities as well which may not fall into the categories above.

Factors to Consider When Choosing Activities

Factors to consider when choosing activities for persons living with dementia include, amongst other things:

• Individual differences
• Type of dementia
• Age
• Personnel who need to be involved such as family caregivers, therapists, attendants, and the level of skill needed to facilitate these activities
• Mobility
• Past injuries
• Health conditions
• The stage of dementia
• The environment in which activities are conducted
• A schedule for persons with dementia and their caregivers that they find workable.

Personal Preferences
The preferences of the person taking part in the activity must also be considered. Activity facilitators and planners are encouraged to ask the persons taking part in the activity about what activities they would like to take part in from a choice of activities. They can also be asked whether the activity that they are being currently offered is something they would like to participate in.

Variety
Having a variety of activities is also highly encouraged. Having different activities will allow the participants to enjoy themselves and be engaged.

Here is a video by the Agency for Integrated Care about how persons living with dementia can be guided by caregivers and persons around them in daily activities. The video’s tips apply to a wide range of activities, including recreational activities.

Source: Agency for Integrated Care

Benefits of Activities

All persons, including persons living with dementia, have various needs, including psychological needs. Some of these psychological needs include attachment, comfort, identity, inclusion, and occupation. These needs are more likely to be met when these persons participate in recreational activities.3

There is evidence that participating in recreational activities improves the overall well-being of persons living with dementia. Amongst other benefits, evidence suggests that recreational activities promote, depending on the kind of activity4-6:

• Physical activity.
• Social and mental well-being.
• Cognitive function.
• Self-perceived health status.
• Functional ability.
• A sense of meaning through: feelings of pleasure and enjoyment experienced through involvement, a sense of connection and belonging, and a sense of autonomy and personal identity.

Facilitating Activities

If you are a caregiver, care professional, or anyone engaging a person living with dementia, here are some tips from the Agency for Integrated Care on how you can engage persons living with dementia through an activity:

• Choose activities that are similar to what they have always enjoyed.
• Emphasise their strengths. Focus on what the person living with dementia can do and not on what they cannot do.
• Communicate with them verbally and non-verbally. Always allow time for response and minimise options to reduce the likelihood of confusion or distress.
• Make sure the area is comfortable and conducive – provide adequate lighting, allow ample space to move around, and minimise background noise
• Keep an eye for signs of fatigue or being overwhelmed – frequently check if the person needs to rest

Examples of Recreational Activities

Sing A Song | Connecting Caregiver Tips by Forget Us Not

This video shows how a family has karaoke sessions together with Mr Peter Lim, a family member who lives with dementia.

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore

I Made A Card Game For Seniors | Connecting Caregiver Tips by Forget Us Not

Christel Goh is the creator of Hua Hee, a card game for seniors. She cares for her grandmother who is showing signs of dementia. She believes that games and constant engagement can delay the onset of dementia.

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore

Hinghwa Methodist Church’s Silver Buddies programme

The Hinghwa Methodist Church Singapore runs Silver Buddies, bringing the community (including nearby residents) together to care for their mental, physical and social well-being. This is an example of a community recreational activity initiative. Community groups can conduct similar activities for different groups of people, including persons living with dementia.

Additional Resources

Here are some local and overseas resources and documents on activities and tips for planning activities for persons living with dementia. These resources can be used in different settings, including homes, nursing homes, and centre-based daycare programmes. They can also be used by organisations or groups intending to engage persons living with dementia.

Local Resources

Agency for Integrated Care (AIC)

1. AIC Wellness Programme

The AIC Wellness Programme engages seniors through the provision of meaningful activities to enhance their wellbeing and quality of life. Many of these activities can also be performed by persons living with dementia.

Visit the AIC Wellness Programme page for more resources on recreational activities.

Dementia Singapore

1. Activities To Keep Your Loved Ones With Dementia Engaged During Covid-19

This article by Dementia Singapore is written for caregivers and those who want to care for persons with dementia during COVID-19 pandemic, which has been characterised by more time being spent at home, changes to social interaction patterns, and multiple other life routine changes.

Find out tips and resources on activities that persons living with dementia can still engage in while under pandemic restrictions.


2. Memories Café

Memories Café is a programme for persons living with dementia and their caregivers, conducted at external partner cafés and restaurants. The programme provides a normalised café setting for participants to interact through activities and conversations in a safe, supportive and conducive environment.

Due to the COVID-19 situation, Memories Café has ceased all physical sessions and has gone virtual. Check out Dementia Singapore’s YouTube to watch the recordings of Memories Café virtual sessions!

Find out how to join Memories Café sessions and for more information on the programme.


3. Activity Handbook

This activity handbook by Dementia Singapore (formerly known as Alzheimer’s Disease Association), written for care professionals, contains a list of activities for centre-based daycare programmes and services. It also includes information on theories on active ageing, using a person-centred approach to planning activities, and different ways to structure activities.

Overseas Resources

National Health Service (NHS), U.K.

This webpage details some activities that persons living with dementia can participate in.


Better Health Channel, Australia

This webpage by The Better Health Channel, written for carers of persons living with dementia, describes tips on planning activities for persons living with dementia.


Alzheimer’s Association, U.S.

This webpage by the Alzheimer’s Association in the United States contains a list of 50 activities that family members and friends can do together with persons living with dementia.

References

  1. Cambridge University Press. (2021). Recreation. In Cambridge Dictionary. In https://dictionary.cambridge.org/dictionary/english/recreation
  2. Recreation and Leisure. (2017). In International Classification of Functioning, Disability, and Health (ICF) online browser. https://apps.who.int/classifications/icfbrowser/
  3. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham.
  4. Innes, A., Page, S. J., & Cutler, C. (2016). Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experiences. Dementia15(6), 1643-1665. – https://uhra.herts.ac.uk/bitstream/handle/2299/20100/Innes_Page_and_Cutler_barriers_to_leisure_Accepted_Manuscript.pdf?sequence=2
  5. Fernández-Mayoralas, G., Rojo-Pérez, F., Martínez-Martín, P., Prieto-Flores, M. E., Rodríguez-Blázquez, C., Martín-García, S., Rojo-Abuín, J., & Forjaz, M. J. (2015). Active ageing and quality of life: factors associated with participation in leisure activities among institutionalized older adults, with and without dementia. Aging & mental health19(11), 1031-1041. – https://digital.csic.es/bitstream/10261/109537/1/Aging %26 Mental Health_2015_13607863.2014.996734.pdf
  6. Phinney, A., Chaudhury, H., & O’connor, D. L. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging and Mental Health11(4), 384-393. – https://www.tandfonline.com/doi/abs/10.1080/13607860601086470
  7. Innes, A., Page, S. J., & Cutler, C. (2016). Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experiences. Dementia15(6), 1643-1665. – https://uhra.herts.ac.uk/bitstream/handle/2299/20100/Innes_Page_and_Cutler_barriers_to_leisure_Accepted_Manuscript.pdf?sequence=2

Physical exercise has positive effects on the wellbeing of persons living with dementia, whether the exercise is done for recreation or as therapy. It can be done as the main focus of an activity, or as part of other activities that involve a heightened level of physical movement, such as gardening or dance.

Benefits of Physical Exercises

Physical activity is positively linked to overall health in general. Though research on the link between exercise and the wellbeing of persons living with dementia is still developing, current research has shown that exercise is linked to the improvement of physical functioning in persons living with dementia.1 It also has positive correlations with improvements in cognition, mood, agitation, and functional ability for persons living with dementia in some settings.2

“Aim for 150 minutes of moderate to vigorous every week for a healthier you.”
As recommended by the Health Promotion Board.

Tips For You!

In the two videos below, hear from Andrew Yeo, an exercise therapist who works with elderly living with dementia at the Salvation Army (Peacehaven Nursing Home), about the benefits of keeping our bodies on the move, especially as we get older, and how to make exercising fun and less daunting for the elderly by taking simple walks

Why Exercise?

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore

Get Moving!

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore

Considerations When Choosing and Adapting Physical Exercises

As with any other activity that persons living with dementia participate in, it is important to know certain details about the person with dementia when choosing and adapting the activity for them. These details include the person’s preferences, interests, age, history, and stage of dementia. Read more about factors to consider when choosing appropriate activities on Recreational Activities.

Safety

While taking part in physical exercises, it is important for these persons and their care team to be mindful of their risks to a reasonable degree when selecting physical activities to do. For example, since a higher proportion of persons living with dementia are older in age, they may have a higher fall risk. The activity should be modified such that risk is reduced to a reasonable level.

Attention should also be paid to the environment where persons living with dementia do their physical exercises in order to ensure both their safety and the conduciveness of their environment to their experience of the exercise. Find out more from our articles on Dementia-Inclusive Environments.

Follow These Guided Exercises!

Here are some videos on guided exercise routines that care professionals and caregivers can use to guide persons living with dementia.

Videos from Dementia Singapore

These are videos by the New Horizon Centres (NHCs) of Dementia Singapore (formerly known as Alzheimer’s Disease Association) showing simple exercise routines. Persons living with dementia can continue to participate in physical exercises at home by watching and following the following videos!

 

Stay Home Workouts with NHC Bukit Batok

Workout Song – “Rasa Sayang”

Workout Song – “Ai De Ni Ya He Chu Xun”

Workout Song – “Gao Shan Qing”

Workout Song – “Wang Chun Feng”

Stay Home Workouts with NHC Tampines

Group 1

Sitting 1

Sitting 3

Tara Band 1

Stay Home Workouts with NHC Toa Payoh

Group 1

Group 2

Videos from Dementia-Friendly Singapore

These are videos produced by the Dementia-Friendly Singapore movement on exercise routines for persons living with dementia.

Standing Psychomotoric Exercise

Seated Psychomotoric Exercises

References

  1. Pitkälä, K., Savikko, N., Poysti, M., Strandberg, T., Laakkonen, M. (2013). Efficacy of physical exercise intervention on mobility and physical functioning in older people with dementia: A systematic review. Experimental Gerontology, 48(1), 85-93. https://doi.org/10.1016/j.exger.2012.08.008
  2. Brett, L., Traynor, V., Stapley, P. J. (2016). Effects of physical exercise on health and well-being of individuals living with a dementia in nursing homes: a systematic review. Journal of the American Medical Directors Association, 17(2), 104-116.

Psychosocial interventions is an umbrella term for a wide range of non-pharmacological interventions, activities, therapies, strategies, etc. that aim to promote the psychological and social well-being of individuals. People may be introduced to psychosocial interventions to cope with the challenges of living with disabilities, mental health conditions, etc., or when they need that support to get their lives back on an even keel. There are many types of psychosocial interventions, which include all psychological therapies, psychoeducation programmes, support groups, etc.¹

When it comes to the treatments for persons living with dementia, psychosocial interventions are usually the first approach taken to address the symptoms of dementia, their functional status, quality of life, and social inclusion, before medication is considered.

Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore

Caring for a person living with dementia thus involves many things, including the use of both medications and psychosocial interventions (such as engagement and environmental changes to suit the person). Care plans integrate both these kinds of treatments while addressing the biological, psychological, and social factors that affect the condition of a person living with dementia.

A care approach for persons living with dementia also often includes recreational activities, physical exercise, constant social support, amongst other psychosocial interventions. Care professionals working in healthcare or related care systems may work with persons living with dementia and their caregivers to link them to the appropriate organisations for the appropriate services.

Some examples of psychosocial interventions for persons living with dementia include:

• Cognitive Stimulation Therapy
• Creative Dance
• Namaste Care Programme
• Participatory Arts
• Counselling

References

  1. Forsman, A. K., Nordmyr, J., & Wahlbeck, K. (2011). Psychosocial interventions for the promotion of mental health and the prevention of depression among older adults. Health Promotion International, 26(S1), i85 – i107. https://doi.org/10.1093/heapro/dar074

Cognitive Stimulation Therapy, or in short, CST is an evidence-based, non-pharmacological intervention (NPT) for persons living with mild to moderate dementia.1,2 It was developed by Dr Aimee Spector, a clinical psychologist, in 1998, by reviewing the common non-pharmacological therapies for dementia, such as reality orientation and reminiscence therapy. The most effective elements of the different therapies were then combined to create the CST.

How Is CST Being Carried Out?

CST sessions can be carried out by anyone working with persons living with dementia, including healthcare professionals and caregivers. It is recommended for the facilitator, or the person carrying out the sessions, to follow the CST manual or be trained in CST prior to carrying out the sessions.3 The 2 main types of CST that have emerged from current best evidence are group and individual CST. Both types of CST differ in terms of setting, duration and frequency.

Group CST may comprise of 14 sessions over 7 weeks, carried out 1-2x/week in small groups of 4-6 in settings such as residential settings, hospitals and daycare centres.1,3,4 Following the completion of 14 sessions, the group may continue with maintenance CST at 1x/week over 24 weeks.1,4

Individual CST is suitable for persons living with dementia who are unable to participate in groups due to personal preference, social issues or mobility issues.1 It can be carried out at home with the person living with dementia.

General Principles of CST

Successful implementation of CST is dependent on various factors, such as the facilitator’s “therapeutic use of self”: one’s ability to adapt the activities to suit the individual/group’s interests, abilities and preferences,5 and guiding principles. Below are the key guiding principles for conducting CST sessions adapted from the “Journey with You” Programme Manual by Dementia Singapore and Cognitive Stimulation Therapy.

Themed Activities Adapted to Local Context

Each session follows a theme which determines the main activities that occur in the session. It is highly recommended for the activities to be as “localised” as possible to stimulate participation from the person living with dementia. Some examples are:

• Childhood games e.g. five stones, marbles
• Current affairs e.g. newspaper cuttings from Straits Times, Lianhe Wanbao, Berita Harian
• Food e.g. tasting Nonya kueh, hawker centre food
• Supermarket shopping e.g. budgeting for groceries using local currency

Conducive Environment & Pace

The session is carried out at a location that is familiar and comfortable to the person living with dementia. It is preferable to choose a location with minimal distractions and noise. For group CST, it may consist of persons living with dementia with similar background and interests to foster a sense of belonging and cohesion.

Providing Involvement & Inclusion

Just like how one feels valued from being listened to, the facilitator must acknowledge the perspective of the person living with dementia, and support his feelings through validation and reminiscence. Reminiscence can also be used to orientate to the here and now.

Giving Respect

Respect the person living with dementia as someone who has a lifetime worth of experiences, and support his identity and dignity. One can show this respect by communicating with them as an individual in their own right, and being curious about their life story, such as about what this person was like at different periods of their life.

Involve the Senses

Use different senses to help bring back memories: Involve things to see, hear, touch, taste and smell. For example, one can play music that may be familiar to the person, or let the person smell food or ingredients that may be familiar to them.

Opinions Rather Than Facts

Encourage sharing of opinions, rather than focusing on facts. Using opinion-focused questions e.g. “what do you think..” with no right or wrong answers. Every contribution should be perceived as a “success”.5

Support Creativity

Encourage new, meaningful connection of thoughts and ideas through conversations and discussions.

Stimulating Language

Ask questions such as “who”, “what”, “where”, “how” and “why” to stimulate conversations. Offer choices when possible.

Maximising Potential

Provide activities and explore new possibilities which utilise one’s strengths.

Providing Choice & Fun

Ensure a variety of activities aligned to the person’s interests/leisure preferences. Introducing new activities is a good way to stimulate interest and motivation.

There needs to be a balance between providing structure and routine and providing sessions that are not too predictable. Doing so will continue to gently challenge and stimulate the person living with dementia to stretch their cognitive abilities.5

Benefits of CST for Persons Living With Dementia

Research has looked into how participation in CST has influenced the cognition of persons living with dementia and quality of life (QoL) for both themselves and their caregivers.

Positive Impact on Cognition & Functional Abilities

Cognition, or simplified as “thinking skills”, refers to one’s ability to think, plan, and carry out activities.

A review of current studies showed that CST had a beneficial effect on cognition, self-reported QoL and wellbeing, as well as communication and social interaction.5 However, there was no significant effect on mood, activities of daily living (ADLs), general behaviour, caregiver depression, anxiety or burden.5

In spite of no significant improvements, there is evidence that ADL performance may be retained by continued participation in mentally stimulating activities.6 In some studies,2,7 participants who were engaged in CST reported improved memory retention and recall. There were also improvements in alertness and concentration levels, described as a sense of being more “switched on” and wanting to attend to things more, leading to more participation in ADLs. In addition, caregivers reported that they observed improved verbal abilities in their loved ones during everyday activities.7

Such positive gains in cognition can lead to an improved quality of life for both the PwD and their caregivers.1,2

Positive Impact on Everyday Life

Improved QoL
Due to cognitive gains such as feeling alert, increased awareness of their environment, and ability to process their thoughts better8 as a result of consistent engagement in CST, it is natural for both PwDs and their caregivers to report experiencing increased QoL.

Opportunity to talk and reminisce
Often, boredom and lack of interest to do activities are negative signs of well-being observed in persons living with dementia which are brought about by lack of opportunities for activity engagement.5

When engaged in CST, it is common for persons living with dementia to smile and laugh, which are signs of positive well-being.5 In addition, the opportunity to engage in stimulating conversations/discussions with like-minded peers also help persons living with dementia and caregivers to stay connected with their families, friends and communities,8 and forge new relationships.5 Persons living with dementia also stay motivated to interact with one another because the interaction was on their terms and at their pace.5,7 These further enhanced well being by promoting a sense of belonging to a community, which made the persons living with dementia look forward to future sessions and also increase their willingness to try out new activities.5

Sense of pleasure and enjoyment
Most persons living with dementia find the themed activities in CST pleasurable, entertaining and interesting. For some, the feelings of enjoyment and achievement were more notable then completion of specific activities and was sometimes sustained even after completing the sessions.5,8

Due to cognitive difficulties, persons living with dementia may experience a profound loss in self-confidence. CST may help to restore confidence by providing the just-right level of challenge in its activities which allows them to utilise one’s remaining strengths/abilities.7 This in turn, leads to an improved sense of competence and morale, which also enhances one’s cognitive performance.7

Gaps in CST Evidence

Lack of Conclusive Evidence About Impact on Cognition, & Behavioural & Psychological Symptoms of Dementia (BPSD)

Research has not shown any conclusive results on the effectiveness of CST in improving cognition or minimising BPSD,2,8 even though iCST intervention provided persons living with dementia with opportunities to engage in mentally stimulating activities which resulted in their abilities to  ‘think better’ and increase their alertness and awareness. Besides the differing duration, length and number of sessions of CST which made examining the outcomes challenging, participant dropout rates due to lack of interest also contributed to the inconclusive results.8

There was also feedback that CST activities were not stimulating enough for persons with mild dementia. Future research should investigate suitability of cognitive stimulation interventions and the importance of matching activities to personal preferences and level of stimulation.8

Caregiver-Identified Barriers

Some caregivers found conducting CST for persons living with dementia challenging because of the progressive nature of the disease. Poor physical health or decreased emotional well-being also diminished activity participation for persons living with dementia.8

Some caregivers have reported that they found it hard to fit CST into a busy schedule.1 Others did not feel skilled enough to deliver the CST sessions, which could impact on the adherence to the programme.8 These may be relieved by having extra support such as involving other people in delivering the CST sessions during times when the caregivers were unable to.8

Due to the beneficial effects found, occupational therapists Hoffmann and Liddle (2012) concluded that CST ‘is worth consideration as a therapeutic approach’.5

CST in Singapore

CST is not a common intervention approach used for persons living with dementia admitted to acute/community hospital settings as the focus is mainly on medical treatment and rehabilitation. In addition, there are barriers in ensuring that healthcare staff consistently apply the guiding principles when conducting CST sessions, such as the lack of mentorship and regular training sessions.

In the community sector, CST is emerging as an evidence-based and cost-effective approach for persons living with dementia in settings such as elderly daycare, residential facilities, and even as part of home-based services. More can be done in advocating for the benefits of CST on quality of life and well-being for persons living with dementia and training for staff to conduct CST competently.

References

  1. Yates, L. A., Orrell, M., Spector, A. & Orgeta, V. (2015). Service users’ involvement in the development of individual Cognitive Stimulation Therapy (iCST) for dementia: A qualitative study. BMC Geriatrics, 15(4), 1-10. https://doi.org/10.1186/s12877-015-0004-5
  2. Zucchella, C., Sinforiani, E., Tamburin, S., Federico, A., Mantovani, E., Bernini, S., Casale, R. & Bartolo, M. (2018). The multidisciplinary approach to Alzheimer’s disease and dementia: A narrative review of non-pharmacological treatment. Frontiers in Neurology, https://doi.org/10.3389/fneur.2018.01058
  3. Cognitive Stimulation Therapy. (2020). An introduction to cognitive stimulation therapy. http://www.cstdementia.com/
  4. Streater, A., Spector, A., Aguirre, E. & Orrell, M. (2016). Cognitive stimulation therapy (CST) for people with dementia in practice: An observational study. British Journal of Occupational Therapy, 79(12), 762-767. https://doi.org/10.1177/0308022616668358
  5. Murray, C. M., Gilbert-Hunt, S., Berndt, A. & Perrelle, L. d. L. (2016). Promoting participation and engagement for people with dementia through a cognitive stimulation therapy programme delivered by students: A descriptive qualitative study. British Journal of Occupational Therapy, 79(10), 620-628. https://doi.org/10.1177/0308022616653972
  6. Dementia Australia. (2016). Mental exercise and dementia. https://www.dementia.org.au/sites/default/files/helpsheets/Helpsheet-DementiaQandA06-MentalExercise_english.pdf
  7. Spector, A., Gardner, C. & Orrell, M. (2011). The impact of Cognitive Stimulation Therapy groups of people with dementia: Views from participants, their carers and group facilitators. Aging & Mental Health, 15(8), 945-949. doi: 1080/13607863.2011.586622.
  8. Leung, P., Yates, L., Orgeta, V., Hamidi, F., & Orrell, M. (2017). The experiences of people with dementia and their carers in individual cognitive stimulation therapy. International Journal of Geriatric Psychiatry, 32(12), e34-e42. doi: 10.1002/gps.4648.

Dancing can be a form of expression for persons living with dementia too, as they connect and interact with others through dance. Read on to learn about Creative Dance, another potential psychosocial activity to support the well-being of persons living with dementia.

To complement the modest benefits of pharmacological treatment on cognitive decline in dementia, arts-based programmes have been increasingly used as a non-pharmacological approach to delay the effects of dementia.1,2 Amongst them, creative dance as an art form had been highlighted as a promising contribution to the health, well-being and quality of life of persons living with dementia.3

For most people, the idea of dance entails specific ‘techniques’, such as ballet, ballroom dancing, etc., and thus requires a young, fit body to be able to dance. However, for Dr Heather Hill (a dance therapist with over 30 years of experience), dance is not just for dancers, it is for everyone, including persons with dementia and severe disabilities.26

Photo: Cathy Greenblat, 2013

The intervention targets the individual and the caring relationship. It consists of:
1. Pre-greeting with each individual before simple warm-up movements;
2. Main activity that uses improvised movements with culturally appropriate music familiar to the generation of the participants;
3. Collaborative exercises that tap on the themes suggested by the group; and finally
4. A closure with greetings and sharing among the group.

The embedded opportunities for free self-expression, creativity, play and reminiscence was facilitated by a trained care professional. The following paragraphs will discuss the underlying principles of using this creative dance, the supporting evidence and its limitations, and the recommendation for best practices.

Underlying Principles of Creative Dance

While dance movement therapy requires a tertiary level certified dance movement therapist to facilitate, creative dance can be conducted by any care professional who has undergone some basic training. The activity incorporates music, movement and dance to affirm the personhood of persons living with dementia.14 The process of creating arts through the use of whole-body movements and the verbal and non-verbal cues provided, can create well-being, stability and connection with reality at the physical, sensory, emotional and social level.9 The movement repertoire will convey the subjective feelings of the individual, allowing them to be understood and validated.8 The movement approach for persons living with dementia is a process of trying to communicate on a level not limited to spoken words.7,9,10 Such meaningful communication between the participants enhances the interpersonal experiences of persons living with dementia, thereby achieving positive person work.3 It is proposed that the co-creation of creative forms of movement can help persons living with dementia feel grounded in their bodies and reality, to better understand their sense of self and place in the world.8,9

Photo: Cathy Greenblat, 2013

Benefits & Limitations of Creative Dance

Improved Quality of Life & Well-Being

The use of creative dance as an activity for persons living with dementia had been reported to improve quality of life12 and well-being while providing enjoyment and pleasure.3,11 In a particular study, the overall quality of life rating by the participants after the 6-weeks of 2 hours- weekly group-based session was statistically significant pre and post programme.13 Though the individual domain scores for physical, psychological and social were not statistically significant owing to the small sample of 10 participants. However, a larger local study on 35 participants concluded that 8-weeks of weekly 1 hour creative dance activity is a means to enhance the overall mood and engagement level of the individuals.3 This is in addition to the improvement in the subjective perceived state of satisfaction in one’s abilities and achievement.

Affirming Personhood

Photo: Cathy Greenblat, 2013

The process of creating arts through the use of whole-body movements and the verbal and non-verbal cues provided, allowed the participants to find comfort, to relate to the facilitator and share their feelings and experiences.7 This in turns, fostered the social interaction and a sense of belonging and inclusion among the participants.1 Hayes and Povey15 also emphasized that in the movement approach, facilitators focused on enabling and encouraging engagement, assessing and providing the needed level of support while maintaining warmth and unconditional positive regard. Such approaches were potential personal enhancers to the personhood of the participants. This could lead to a sense of inclusion, as well as feeling empowered in meaningful task participation and validation of self and identity.

Familiarity with the reminiscent music used created opportunities for discussion of past memories.16 Both local studies echoed that creative dance interventions are associated with the ability for the participants to communicate and express themselves using non-verbal and movement as substitutes for speech.3,13 This also contributed to a greater sense of security and comfort within the group.

Enhance Physical & Cognitive Health

Dance intervention was an alternative to improve the physical health and functional fitness in older adults. A systematic review showed that participating with a minimum of weekly, 45-minute duration for at least 6 weeks, can have a significant positive effect on muscular strength, endurance and balance.17 Locally, participation in creative dance intervention was associated with increased gait speed and self-rated confidence level in the individual’s activities of daily living.3 Creative dance might have contributed to the maintenance of motor abilities in the older persons as they improvise on their movement and adapt to the spatial and temporal demands. Yan et al.18 further concluded that exercise in the form of dance intervention has a significantly greater effect compared to structured exercise on the capacity of improving functional performance in the timed up-and-go test, and in balance reflected the Berg balance score. Moreover, dance as an exercise programme compared to structured exercise is better received by the older population. The pleasure and enjoyment served to encourage regular participation was demonstrated by its low attrition rates and high completion rates.18 Dance also eliminated barriers to participation such as pre-existing medical conditions and physical limitations, which were prime considerations when participating in physical exercises.17

Dance that requires creative improvisation, as opposed to therapeutic exercises, could induce cognitive flexibility.19 In creative dance, participants have to adapt to the constraints in space, time, and interaction with others. Their study suggested that the cognitive flexibility was correlated to enhanced motor flexibility, resulting in better postural control in the participants. On the same hand, the emotional and social aspects of dancing had beneficial effects on cognitive function.20 Learning the steps, being focused on others in the group and coordinating movement with the tune of the music elicited multiple brain network activations. The structured interaction in the group also enhanced general cognitive functioning since it promoted interdependence, thereby allowing the individuals to be less anxious and uncertain, providing more opportunities for them to respond to the cognitive demands.21

Existing Research Gap

While there is a call for increased awareness for the use of creative dance, its limitations need to be recognised. Most studies were small and lacking comparative controls. Local studies mainly sampled on persons with mild to moderate dementia and the benefits for the persons with advanced dementia were less discussed. The extent to which health comorbidities impacted on the outcomes of creative dance also warrants further investigation. It also remained unclear if the benefits previously mentioned are long-term. The sustainability of the programme, including outcome-based on facilitation by care staff and the possible support from family members and/or volunteers instead of therapists in the local setting, still requires more in-depth research.

Recommendation for Best Practices

Creative Dance as a Means

Creative dance as an activity has a therapeutic effect if it is used as a means to draw out social interaction from the participants. It is the deliberate creation of opportunities to better understand the individuals that allows them to flow from their physical doing into well-being.3 The structured improvisation of the session plan is vital to respect and acknowledge the verbal and movement input of the participants, allowing self-expression and strengthening their self-esteem.10 While the presence of a group provides opportunities for persons living with dementia to interact, providing the just right activity challenge and use of relevant stimuli is the basis of good quality groups to significantly impact mood and engagement.22 Individual’s creativity should not be limited to the creative expressions in the moment but also viewed as how the interaction and relationship is forged with each contribution.14

Photo: Cathy Greenblat, 2013

Constant practical adaptations were essential to enable persons living with dementia to succeed in the task given. Multi-sensory stimulation can also be incorporated through the use of props such as coloured balls, scarves, textiles to facilitate creative expression with tool use and instil a sense of fun.23

Facilitating Person-Centred Care Interaction

The facilitator has a bearing on the quality of the intervention. The skill of facilitation and style of approach can affect the extent of positive outcomes.24 While the session is intentionally designed in response to the composition and abilities of the participants, the preferred approach is to constantly customise and modify the session to suit the needs of the participants.3,23 Supported by the understanding of each individual’s likes and dislikes, the facilitator needs to pick up both the verbal and non-verbal cues demonstrated by each participant throughout the session, and tailor the intervention to meet one’s needs. The facilitator needs to actively listen and not judge, and have the flexibility and creativity in problem-solving, tuning in to the person and the group dynamics to find the rhythm that proffers most stability and security to optimize participation.10 As the group jointly constructs the creative expressions of self through movement, singing, mirroring, spontaneous play and joke-making, the facilitator builds on the relationship and interacts by supporting and upholding the psychological needs of comfort, identity, attachment, occupation and inclusion. When opportunity rises, the discussion of the happy past experiences as well as the sad moments are both of equal importance to acknowledge the individual as a whole, showing recognition of the participant’s uniqueness, valuing them and accepting them.

Enabling Environment

Supportive physical and social environment will result in greater gains for the participants. Provision of a dedicated space with good ventilation and lighting, that is set apart from other possible concurrent activities can help minimise the noise levels and disruption from activity engagement.3,23,24 Ensuring adequate equipment such as stable chairs proffers the option of both sitting and supported standing during creative expression of self. Availability of props and back-up music helps the session to continue flowing despite technical difficulties. Empowering the facilitator on knowledge on dementia and frailty is vital so as to help overcome some barriers posed by comorbid health conditions of the participants on intervention delivery such as limited attention span, fatigue, physical weakness and the potential risk of falling.23 An overall workplace culture that embraces the programme is also a key to reaping benefits from the creative dance intervention. Other than allocating adequate staffing ratio to ensure appropriate supervision and regularity of the session, having staff who are enthusiastic about the programme is associated with more positive reactions from the participants.3,23,25

Conclusion

There is a growing recognition that creative dance can make positive contributions to the people living with dementia. Creative dance provides the means to enhance communication, socialization, pleasure, enjoyment and well-being through the opportunities of self-expression. Well-trained staff, good staffing ratio coupled with a specifically designed activity plan that is constantly adapted to the participants’ needs are the key elements to achieve the desired overall well-being in persons living with dementia.

Photo: Cathy Greenblat, 2013

Additional Resources

To learn more about running creative dance sessions with persons living with dementia, you may refer to this book by Dr Heather Hill, “Invitation of the Dance”. It is intended for any care professional who is keen to conduct a session for their participants.

To learn more about dance movement therapy, you may check out these websites:
1. American Dance Therapy Association
2. Dance Movement Therapy Association of Australasia

References

  1. Schneider, J. (2018). The arts as a medium for care and self-care in dementia: Arguments and evidence. International Journal of Environmental Research and Public Health, 15, https://doi.org/10.3390/ijerph15061151
  2. Skinner, M.W., Herron, R.V., & Bar, R.J. (2018). Improving social inclusion for people with dementia and carers through sharing dance: A qualitative sequential continuum of care pilot study protocol. BMJ Open, 8, e026912. https://doi.org/10.1136/bmjopen-2018-026912
  3. Koh, W.L.E., Low, F., Kam, J.W., Rahim, S., Ng, W.F., & Ng, L.L. (2019). Person-centred creative dance intervention for persons with dementia living in the community in Singapore. Dementia, 1-14. https://doi.org/10.1177/1471301218823439
  4. Chenoweth, L., Stein-Parbury, J., Lapkin, S., Wang, A., Liu, Z., & Williams, A. (2019). Effects of person-centred care at the organizational-level for people with dementia: A systematic review. PLoS ONE, 14(2), e0212686. https://doi.org/10.1371/journal.pone.0212686
  5. Kitwood, T.M. (1997). Dementia reconsidered: The person comes first. Open University Press.
  6. Manthorpe, J., & Samsi, K. (2016). Person-centred dementia care: Current perspectives. Clinical Interventions in Aging, 11, 1733-1740. https://doi.org/10.2147/CIA.S104618
  7. Kayoko, A.D. (1997). Dance movement therapy and reminiscence: A new approach to senile dementia in japan, The Arts in Psychotherapy, 24(3), 291-298. https://doi.org/10.1016/S0197-4556(97)00031-2
  8. Coaten, R., & Newman-Bluestein, D. (2013). Embodiment and dementia: Dance movement psychotherapists respond. Dementia, 12(6), 677-681. https://www.doi.org/10.1177/1471301213507033
  9. De Tord, P., & Brauninger, I. (2015). Grounding: Theoretical application and practice in dance movement therapy. The Arts in Psychotherapy, 43, 16-22. http://dx.doi.org/10.1016/j.aip.2015.02.001
  10. Zeindlinger, E. (2014). Between the lines: Communication with people with dementia in creative movement sessions. Anthropology in Action, 21(1), 24-29. https://doi.org/10.3167/aia.2014.210105
  11. Beard, R.L. (2011). Art therapies and dementia care: A systematic review. Dementia, 11(5), 633-656. https://doi.org/10.1177/1471301211421090
  12. Gabriel, C., Ting, S., Liong, A., & Hameed, S. (2014, September 5). Impacting quality of life and cognition in dementia patients through dance movements: Everyday Waltzes [Poster presentation]. Singhealth Duke-NUS Scientific Congress 2014.
  13. Hameed, S., Shah, J.M., Ting, S., Gabriel, C., Tay, S.Y., Chotphoksap, U., & Liong, A. (2018). Improving the quality of life in persons with dementia through a pilot study of a creative dance movement programme in an Asian setting. International Journal of Neurorehabilitation, 5, https://doi.org/10.4172/2376-0281.1000334
  14. Bellass, S., Balmer, A., May, V., Keady, J., Buse, C., Capstick, A., Burke, L., Bartlett, R., & Hodgson, J. (2019). Broadening the debate on creativity and dementia: A critical approach. Dementia, 18, 2799-2820. https://doi.org/10.1177/1471301218760906
  15. Hayes, J., & Povey, S. (2011). The creative arts in dementia care. Jessica Kingsley Publishers.
  16. Choo, T., Barak, Y., & East, A. (2019). The effect of intuitive movement reembodiment on the quality of life of older adults with dementia: A pilot study.
  17. American Journal of Alzheimer’s Disease & Other Dementias, 35, 1-7. https://doi.org/10.1177/1533317519860331
  18. Hwang, P.W.N., & Braun, K.L. (2015). The effectiveness of dance interventions to improve older adults’ health: A systematic literature review. Alternative Therapies, 21(5), 64-70.
  19. Yan, A.F., Cobley, S., Chan, C., Pappas, E., Nicholson, L.L., Ward, R.E., Murdoch, R.E., Gu, Y., Trevor, B.L., Vassallo, A.J., Wewege, M.A., & Hiller, C.E. (2018). The effectiveness of dance intervention on physical health outcomes compared to other forms of physical activity: A systematic review and meta-analysis. Sports Medicine, 48, 933-951. https://doi.org/10.1007/s40279-017-0853-5
  20. Ferrufino, L., Bril, B., Dietrich, G., Nokana, T., & Coubard, O.A. (2011) Practice of contemporary dance promotes stochastic postural control in aging, Frontiers in Neuroscience, 5(169), 1-9.
  21. Kim, S.H., Kim, M., Ahn, Y.B., Lim, H.K., Kang, S.G., Cho, J., Park, S.J., & Song, S.W. (2011). Effects of dance exercise on cognitive function in elderly patients with metabolic syndrome: A pilot study. Journal of Sports Science and Medicine, 10, 671-675.
  22. Ybarra, O., Burnstein, E., Winkielman, P., Keller, M.C., Manis, M., Chan, E., & Rodriguez, J. (2008). Mental exercising through simple socializing: Social interaction promotes general cognitive functioning. Society for Personality and Social Psychology, 34(2), 248-259. https://doi.org/10.1177/0146167207310454
  23. Cohen-Mansfield, J. (2018). The impact of group activities and their content on persons with dementia attending them. Alzheimer’s Research & Therapy, 10, https://doi.org/10.1186/s13195-019-0357-z
  24. Gomaa, Y.S., Slade, S.C., Tamplin, J., Wittwer, J.E., Gray, R., Blackberry, I., & Morris, M.E. (2020). Therapeutic dancing for frial older people in residential aged care: A thematic analysis of barriers and facilitators to implementation. The International Journal of Aging and Human Development, 90(4), 403-422. https://doi.org/10.1177/0091415019854775
  25. Rylatt, P. (2012). The benefits of creative therapy for people with dementia. Nursing Standard. 26, 42-47. https://doi.org/10.7748/ns2012.04.26.33.42.c9050
  26. Guzman-Garcia, A., Hughes, J.C., James, I.A., & Rochester, L. (2013). Dancing as a psychological intervention in care homes: A systematic review of the literature. International Journal of Geriatric Psychiatry, 28, 914-924. https://doi.org/10.1002/gps.3913

Nature & Background

Namaste Care programme is a structured intervention for persons living with advanced dementia, which incorporates sensory intervention, social contact and environmental modification. It aims to respect the individual person for his or her unique personhood, nurture the individual spirit with meaningful activities using a loving touch approach, within a calm and home-like environment.

Namaste Care Programme was initiated by Joyce Simard in the USA in 2003. A qualified social worker working in care homes in the USA, Joyce Simard attended to symptoms of persons living with advanced dementia and started to concentrate on their needs beyond medical concerns. She was inspired by the meaning of the Hindu term “Namaste” which is “to honour the spirit within” to base her development work on the “social, emotional and psychological aspects” of persons living with advanced dementia.1

Namaste Care programme was developed for care home residents with advanced dementia who might not benefit from typical group activities.2 Namaste Care is a daily programme that runs for 2 hours both in the morning and afternoon.2 An example of possible activities in a Namaste Care session is provided by Magee et al.3 during a feasibility trial of a programme in a care home in Northern Ireland with frequency of once-daily for 5 days a week over a span of 4 weeks.

“Seeing is Believing”, a 4-min video by Association for Dementia Studies, UK provides a good illustration of how Namaste Care is carried out, including benefits to persons at the advanced stage of dementia.

Source: Association for Dementia Studies at the University of Worcester

The original intention of Namaste Care targeted a small group of people living with advanced dementia in a residential setting. It has since been trialled in different settings including:

• Namaste Care Family programme in 10 Dutch nursing homes involving volunteers and family caregivers4,5
• Acute hospital setting in UK by activity coordinators,6 and tertiary hospital setting in Singapore by nurses7
• At individual home facilitated by volunteers via one-to-one session offered by community hospice in UK8

Namaste Care Intervention UK guidance documents serve to support Namaste Care workers running Namaste Care sessions in care homes in the UK.1 The guide discussed the specifics of setup and conducting Namaste Care sessions, supported by evidence-based literature and practical experience shared by care staff and family caregivers of 6 case-study care homes in the UK. According to the guide, Namaste Care can be extended to other residents in care homes including:

• Persons living with dementia at different stages of dementia with complex needs due to mental health issues, learning disability or resulting from behavioural and psychological symptoms of dementia.
• Other residents without dementia during periods of ill-health for a short time.

Principles & Core Elements of Namaste Care

The Goal of Namaste Care is to “honour the spirits within” the persons living with advanced dementia.9 Two Principles defining the practice of Namaste Care according to Manzar & Volicer,10 delivered via a one-to-one approach with consistent care staff are:

1. Comfortable environment which promotes:

a. Sense of calm
b. Small group setting and family-like
c. Meaningful verbal and non-verbal communication

2. Loving Touch focusing on:

a. Massage of hands and feet, hair and nail care

The relationship between the principles of Namaste Care and the effects on residents, staff and family are reflected in the diagram below:

dementiahub

(Volicer, 2019)

The foundation of Namaste Care is consistent with Person-Centred Care principles to meet needs of individuals living with advanced dementia.11 Kitwood’s identified psychological needs of persons living with dementia could be matched to core elements of Namaste Care2 as given below:

dementiahub

According to Stacpoole et al.12, core elements of Namaste Care include the guiding principle of respectful and compassionate approach towards persons living with advanced dementia and the following crucial components:

• Presence of others in a social group
• Comfort and pain management
• Sensory stimulation of the 5 senses
• Meaningful activities via personal care
• Life story knowledge of individual
• Food treats and hydration during session
• Care worker education and support
• Family meetings and involvement
• Care of the dying and after-death care
• After-death reflection by care staff

More information on the core elements can be found in Toolkit for implementing the Namaste Care programme for people with advanced dementia living in care homes developed by St Christopher’s Hospice, London.12 

Benefits & Challenges

Few studies have found that Namaste Care resulted in decreased pain, more interaction between service users with staff and family members, and increased job satisfaction with staff.10

Persons living with Advanced dementia

1. Better quality of life with reduced experience of behavioural symptoms, pain and occupational disruptiveness;
2. Greater awareness and engagement in the environment; and
3. Given less medications.11,13,14

Care staff

1. Increase in confidence and self-esteem in providing care;
2. Better teamwork and greater job satisfaction; and
3. Practice of person-centred approach in care delivery.2,10,14

Relatives & Family Members

1. Fostered closer relationships with loved ones;
2. Improved communication with care home staff; and
3. Better visiting experience in care home.2,10,14

Namaste Care can enhance the Quality of Life of persons living with advanced dementia in care homes with existing “strong leadership” and “adequate staffing”; including quality nursing and medical care support.6, 11

According to Simard15, implementation of a successful Namaste Care programme requires “flexibility” and “creativity” of staff to tailor the programme to meet different needs and requirements in different nursing home settings. Continual ground experience and regular practice of Namaste Care principles through application of techniques help staff to stay relevant and improve in delivery of Namaste Care.15

Challenges on smooth implementation of Namaste Care resulted from the following factors:

• Unpredictable management support or considerable organizational changes14
• Lack of adequate clinical support14
• Collaboration between nursing and medical support11

There is limited scientific evidence on significant findings of application of Namaste Care approach,16 and effectiveness of Namaste Care activities8,17 for the following reasons:

• Small-scale studies or use of small sample sizes
• Lack of qualitative study on impact of Namaste Care on residents, staff and family caregivers in long-term care facilities within and outside USA
• Lack of quality research and review on a well-defined format in running a Namaste Care session using a clear recommended set of activities.

More RCT and review in evidence-based literature are needed to conclude and guide care staff or family caregivers to tailor Namaste Care sessions to persons living with advanced dementia in different care settings whether in centre- or home-based environment. Consistency in the delivery of Namaste Care programmes in different settings is an important consideration relating to the recommended daily frequency of at least 4 hours. Daily Namaste Care sessions appeared to have lasting effects on behavioural symptoms and meaningful activities for persons living with advanced dementia in long-term care facilities as compared with shorter and less regular programmes like Snoezelen Therapy, Multisensory and Motor Based Group Activity Programme, and Garden Experience.9

Guidelines for Implementing Namaste Care

1. A Sample Session Plan For Namaste Care in Dementia Day Care Centre

A suggestion on how a 1-hour Namaste Care session can be provided in a dementia day care environment:1,12

a. Greet individual with his or her preferred name and welcome into the Namaste room or a private space
b. Enable the individual to feel comfortable when seated, use blanket/ pillows/ towels where appropriate
c. Provide a warm towel to wipe hands
d. Offer a warm drink or sips of drink when individual is settled in the seat
e. Introduce meaningful activities involving gentle stimulation of different senses during the session

• Hand, scalp and/or foot massages as tolerated by the individual
• Tea break with snacks and drink

f. Towards end of session, prepare the individual for next part of the day, e.g. activities to energize or continue with relaxation

• Alerting with music and gentle movements in upper and/or lower limbs
• Grooming before leaving eg hair combing, brushing and styling
• Getting ready to leave

g. Thank the individual and say goodbye individually to all participants

2. List of Equipment/ Materials Needed for Namaste Care

(Reference: St Christopher’s toolkit12)

Ensure a list of basic equipment is prepared and supplies are ready prior to implementation of the Namaste Care programme. Additional items which are relevant to individual clients can be included where feasible.

Essential equipment and supplies (most might already be available in the day facility or nursing home):

• Comfortable chairs
• Music system and CDs (or MP3 player and downloads)
• An aromatherapy diffuser (or a plastic spray bottle with distilled water and a drop of lavender essential oil)
• Attractive coloured rug/blanket for each individual
• A ‘wash bag’, or zip locked bag for each individual containing his or her own brush and comb, face cream and hand cream, nail clippers, emery board, lip balm, etc.
• Drinking cups that can be labelled, or disposable cups and a marker pen
• Face cloths and towels
• A large storage bag for each individual, e.g. a plastic zip bag to keep a rug and/or pillow and perhaps a life-like doll or animal, as preferred by the individual
• A rummage bag with scraps of different textured material, bubble wrap, etc.
• Two to three portable (preferably folding) chairs for the Namaste Care worker and for visitors
• Hand sanitizer, rubbish bags
• Box of tissues for runny noses
• Laundry bags and gloves in case of accidents
• Namaste Care worker has a visible name badge with their first name in large font
• Welcome sign (one care home has a notice: ‘Please come in quietly and gently’)
• A trolley for transportation of equipment for the session

Collect and use individual client’s own supplies (discuss this with family/loved ones):

General Supplies


• Pillows for positioning
• Blankets/rugs/quilts (colourful)
• Face cloths
• Bowls in which to soak hands
• Towels
• Aqueous cream for moisturising skin
• Cotton buds
• Hypoallergenic oil for massage
• Soap dispenser/hand sanitiser
• Gloves and laundry bags in case of accidents
• Disposable wipes

Personal Supplies for Namaste Client


A clearly named bag containing:

• Hairbrush and comb
• Nail clippers
• Emery board
• Face cream
• Lip balm
• Items supplied by the family, e.g. perfume and makeup for women, after shave for men

A large bag such as a dry-cleaning bag to keep the blanket and, for example, a life-like animal, which is preferred by the individual.

Recommended additional list for Namaste equipment (may be available in the day facility or nursing home, or via donation or other available funding):

• Green plants
• One or two life-like dolls
• Life-like cats and dogs
• Life-like singing birds
• A fridge for food treats
• Picture books

• Poetry books
• A variety of essential oils
• Tambourine and rainmaker
• Pictures and ornaments
• A DVD player and appropriate films with a screen to show them
• Foot spa

A private room for Namaste sessions.
Courtesy of Dementia Singapore’s New Horizon Centre at Toa Payoh.

An example of a “perfect” Namaste room:

Ideally, Namaste Care has a designated room with the following considerations:

• Everything can be left in place
• Supplies can be locked after session and
• More active clients can enter the room for sensory exploration with growing plants or fragile ornaments

A Namaste space can be created if there is no designated room to be used. A quiet corner or an area in a suitable environment with minimal distraction can be screened-off.

The environment should be made ‘special’, i.e. welcoming and homely, with natural or slightly dimmed lighting, appropriate décor with attractive scents, and with soft music playing in the background.

In the “perfect” Namaste room, there will be:

• A window looking over a garden
• A door to the outside
• A DVD player and appropriate DVDs
• Reclining chairs
• Ornaments from the past
• A fridge
• A smoothie maker

• A music system with a variety of music
• An aromatherapy diffuser
• Beautiful pictures
• Growing plants
• A cupboard to keep items and can be locked
• A sink with running water
• Curtains or blinds

Namaste Care Trainings

Finally, after reading the sections above and understanding the underlying mechanisms for an impactful Namaste Care Programme, it’s time to put them into practice!

For Caregivers (Basic)

In collaboration with the Agency for Integrated Care (AIC), Apex Harmony Lodge (AHL) has developed a module to:

1. Equip caregivers with the knowledge on Namaste Care principles
2. Equip caregivers with the skills to confidently provide Namaste Care in the form of a gentle hand massage
3. Help caregivers to connect with their clients/loved one

Learn how to provide Namaste Care in the form of a gentle hand massage

Through this course, you will get to learn about Namaste principles, the benefits of Namaste Care, and hand massage techniques.

  • Access the AIC LMS 2.0 course via the link bit.ly/3wBnPUk or scan the QR code.

  • Log in via SingPass.

  • Click on “Express your interest”. You can then locate the course in your Dashboard.

  • If you do not have access to LMS, contact your COO LMS administrator.

At AHL, Namaste Care has been adopted for residents in the Supported Living and Tender Loving Care Homes. Specifically, the programme supports the residents by meeting their sensory and emotional aspirations through the loving provision of personalized and sensory stimulating activities within a tranquil environment.

Read how residents at AHL have benefitted immensely from Namaste Care, such as reduced rejection of care, improved mood, appetite, and engagement!

Find out more about Namaste Care here. If you’ve any questions, please email AIC at ccmh@aic.sg.

For Care Professionals (Intermediate)

Dementia Singapore Academy also offers a Namaste Care course for healthcare professionals. This blended course aims to provide learners with theoretical and practical knowledge of delivering Namaste Care as a specialised intervention for persons living with dementia in their settings.

Find out more here.

Acknowledgment

Some content in this article was adapted from the training notes compiled by Institute of Geriatrics and Active Ageing (IGA) for Namaste Care Workshop by Dr Noorhazlina Bte Ali on 16 and 23 Nov 2019.

References

  1. Jacobson-Wright, N., Latham, I., & Frost, F. (2019). Guidance for Care Homes-Implementing Namaste. University of Worcester: Association for Dementia Studies. https://www.worcester.ac.uk/documents/Guidance-for-Care-Homes-V3-updated.pdf
  2. Stacpoole, M., Hockley, J., Thompsell, A., Simard, J., & Volicer, L. (2017). Implementing the Namaste Care Program for residents with advanced dementia: Exploring the perceptions of families and staff in UK care homes. Annals of Palliative Medicine6(4), 327-339. doi: 21037/apm.2017.06.26.
  3. Magee, M., McCorkell, G., Guille, S., & Coates, V. (2017). Feasibility of the Namaste Care Programme to enhance care for those with advanced dementia. International Journal of Palliative Nursing23(8), 368-376. doi: 10.12968/ijpn.2017.23.8.368.
  4. Smaling, H., Joling, K. J., van de Ven, P. M., Bosmans, J. E., Simard, J., Volicer, L., Achterberg, W. P., Francke, A. L., & van der Steen, J. T. (2018). Effects of the Namaste Care family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: Study protocol of a cluster-randomised controlled trial. BMJ open8(10), e025411. https://doi.org/10.1136/bmjopen-2018-025411
  5. Steen, J. T. V. D., Joling, K. J., Francke, A. L., Achterberg, W. P., & Smaling, H. J. (2019). The effects of the Namaste Care family program on quality of life of people with advanced dementia. Innovation in Aging3(Supplement_1), S824-S824.
  6. St John, K., & Koffman, J. (2017). Introducing Namaste Care to the hospital environment: A pilot study. Annals of Palliative Medicine6(4), 354-364. doi: 10.21037/apm.2017.06.27.
  7. Ali, N., Tan, C. N., Kang, J., Chew, A. P., Caroline, C., & Lim, W. S. (2019). Namaste care program for advanced dementia: Impact on persons with advanced dementia (PWAD), caregivers and healthcare staff. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association15(7), 1446-1447.
  8. Dalkin, S. M., Lhussier, M., Kendall, N., Atkinson, J., & Tolman, S. (2020). Namaste care in the home setting: Developing initial realist explanatory theories and uncovering unintended outcomes. BMJ Open, 10(1), e033046. doi: 10.1136/bmjopen-2019-033046.
  9. Volicer, L. (2019). Review of programs for persons facing death with dementia. Healthcare, 7(2), 1-12. doi: 10.3390/healthcare7020062.
  10. Manzar, B., & Volicer, L. (2015). Effects of namaste care: pilot study. American Journal of Alzheimer’s Disease2(1), 24-37. doi: 7726/ajad.2015.1003.
  11. Stacpoole, M., Hockley, J., Thompsell, A., Simard, J., & Volicer, L. (2015). The Namaste Care programme can reduce behavioural symptoms in care home residents with advanced dementia. International Journal of Geriatric Psychiatry30(7), 702-709. doi: 1002/gps.4211.
  12. Stacpoole, M., Thompsell, A., & Hockley, J. (2016). Toolkit for implementing the Namaste Care programme for people with advanced dementia living in care homes. St Christopher’s. https://www.stchristophers.org.uk/wp-content/uploads/2016/03/Namaste-Care-Programme-Toolkit-06.04.2016.pdf
  13. Simard, J., & Volicer, L. (2010). Effects of Namaste Care on residents who do not benefit from usual activities. American Journal of Alzheimer’s Disease & Other Dementias25(1), 46-50. doi: 10.1177/1533317509333258.
  14. Thompsell, A., Stacpoole, M., & Hockley, J. (2014). Namaste care: The benefits and the challenges. Journal of Dementia Care22(2), 28-30.
  15. Simard, J. (2019). Back to the bedside. Caring for the Ages20(7), 9.
  16. McNiel, P., & Westphal, J. (2018). Namaste Care™: A person-centered care approach for Alzheimer’s and advanced dementia. Western Journal of Nursing Research, 40(1), 37-51. doi: 10.1177/0193945916679631.
  17. Bray, J., Brooker, D. J., & Garabedian, C. (2019). What is the evidence for the activities of Namaste Care?: A rapid assessment review. Dementia, 147130121987829. doi: 10.1177/1471301219878299.

Participatory arts involve persons living with dementia and caregivers in their development, creation, and evaluation processes.

Introduction

Persons living with dementia gradually experience a decline in mental processes, including memory, orientation to space and time, and abstract thinking. The decline in cognitive skills may lead to social withdrawal and difficulties in communication.

To reduce this decline in cognitive and social skills, dementia specialists have expanded from the roots of biomedical treatment to explore other innovative interventions. They adopt the philosophy of ‘Re-mentia’, which refers to gradually improving the functioning of persons living with dementia by fostering a secure environment that sustains their well-being and remaining competencies. A specific non-pharmacological intervention that supports the notion of ‘Re-mentia’ is gaining increasing attention – participatory arts.

What Are Participatory Arts?

Participatory arts, also called community-based arts, constitute a range of activities that directly involve the participants in the development, creation, and evaluation processes. Activities involved may include conceptualizing ideas, experimenting with different mediums in the creative process, and exhibiting the final product to an audience.

Participatory art programs are often delivered over several weeks under the supervision of allied health professionals or art practitioners to small groups of participants and provide a failure-free space for creative expression, self-discovery, and social engagement. Some examples of these art forms include:

• Clay work, Pottery
• Craft work, Collage, Origami
• Expressive Writing, Poetry
• Music, Singing and Movement
• Performing Arts (Dance, Drama, Opera)
• Storytelling, Sharing life stories
• Visual Arts (Museums, Art Galleries)

Despite the variety of participatory arts available, they all share a common value base – person-centered care (PCC). The PCC approach comprises four components emphasized by program facilitators that promote individual dignity:

1. Valuing persons living with dementia and their caretakers
2. Understanding and tailoring to individualistic values, choices, and preferences
3. Looking from the perspective of the individual
4. Reinforcing a positive social environment

Participatory arts are art-related activities that involve persons living with dementia in the development, creation, and evaluation processes.

Benefits of Participatory Arts

By creating and building a space where persons living with dementia can feel safe and thrive, research suggests that engagement in these creative activities can enrich the lives of persons living with dementia. Synthesizing the findings across multiple research studies, the benefits can be summarized into these five fundamental aspects:

Nurturing a Purpose in Life

Participatory art programs provide various opportunities for persons living with dementia to explore new interests or strengthen existing ones. Often, persons living with dementia may lose their sense of direction in life. Exploring a diverse range of creative activities can broaden their range of activity-related skills. Through the application of these acquired skills, they may develop a strengthened sense of purpose to lead a meaningful life.


Promoting Autonomy

Participatory art programs purposefully include all participants as co-creators in the artistic process. Whether the program pertains to learning a new instrument, writing expressive autobiographies, or constructing figures using clay, everyone has the autonomy to map their art journeys based on their values, choices, and preferences. When their efforts are recognized and validated, persons living with dementia feel a sense of achievement and become more empowered to lead independent lives.


Enhancing Self-Esteem

With guidance from experienced art facilitators, persons living with dementia can be supported to take on obstacles they originally lacked confidence in. A sense of assurance and inspiration are key ingredients to gradually enhancing self-esteem. This enhanced self-esteem can serve as a stepping-stone for persons living with dementia to seek and approach challenges that they may face in their daily lives with a resilient perspective.


Building Positive Relationships

The core of all participatory art programs is the mission to bring people together. Due to difficulties associated with cognitive decline, persons living with dementia may face social exclusion and withdrawal. This is further compounded by difficulties in the caregiving process, where communication difficulties can become a barrier between persons living with dementia and their care partners. Participatory arts programs use arts as a creative medium to bridge the lives of persons living with dementia, their care partners, and members of their community, enabling meaningful social relationships to be forged.


Improving Cognitive Skills

Engagement in the arts has some positive effects on the mental processes which are declining in persons living with dementia. Research suggests that many forms of art, such as singing and listening to music, can activate brain regions associated with attention and memory. There is emerging evidence that it may be possible to minimize the progressive cognitive decline that characterizes the biological processes of dementia through active engagement in the art creation journey, which may involve attentional and memory resources.

Important Characteristics of Participatory Arts

Systematic research studies have highlighted the importance of several key aspects in the delivery of participatory arts programs that can maximize the likelihood of positive outcomes. These key aspects should ideally be integrated to construct a meaningful social and physical environment that promotes the well-being and remaining abilities of persons living with dementia.

Interacting Social Contexts

Organizing frequent and regular programs allows the strengthening of bonds among all participants involved in the program, including care partners and volunteers. Through the strengthening of bonds, facilitators build rapport and establish trust with persons living with dementia. This enables persons living with dementia to become accustomed to the program. Fostering a secure environment that allows everyone to interact with one another is foundational for  instilling a sense of social inclusion and engagement.


Incorporation of Reminiscence

Exposure to the arts, especially those with significant cultural or historical value, can bring about unique topics of conversation among persons living with dementia. Through self-expression, persons with dementia can, in part, “re-live” their past in the stories they share through meaningful and structured discussions. The promotion of sharing experiences through self-expression and social engagement can serve as a catalyst for building a supportive and caring environment.


Incorporating Creativity and Imagination

The unique topics of conversation amongst persons living with dementia, facilitated by exposure to the arts, can encourage their creativity and imagination. It is pivotal to incorporate activities that tap on imagination and self-expression. These activities may include discussions about the cultural elements of viewing museum artifacts, or the practices of free association and story-sharing through reminiscing with music or images.


Role of the Facilitator

The facilitator’s role includes encouraging interactions among participants, imparting knowledge, and serving as a role model of confidence and love for learning. Through framing challenges for participants to tackle, promoting self-exploration and discovery, and validating participants’ artwork, facilitators can build an intellectually and socially stimulating environment for everyone to challenge their own abilities and learn from each another.

Beyond Individuals With Dementia – Advocacy for an Inclusive Society

A pressing concern in society today is the social stigma towards persons living with age-related conditions, including dementia. As a result of the stigma, these individuals may experience negative emotions, self-discrimination, and poor self-efficacy.

In recognition of the importance of reducing discrimination and stigma towards persons living with dementia, contemporary societal movements have been initiated and have witnessed benefits.

Dementia-Friendly Communities (DFC) adopt the PCC approach and employ participatory art activities to connect persons living with dementia with members of the public. Social prescribing interventions, such as the “Arts on Prescription” model, reflect the validation and importance of a holistic approach to well-being.

Frequent interactions between members of the public and persons living with dementia can promote greater understanding of dementia and a more positive attitude towards this condition.

With the knowledge that stigma is often propagated by misconceptions, lack of knowledge, and the absence of one-on-one interaction with stigmatized populations, these movements aim to provide opportunities for members of the public to personally interact with community members who are experiencing dementia. Frequent interactions between members of the public and persons living with dementia can promote greater understanding of dementia and a more positive attitude towards this condition. Fostering care and acceptance in the community towards persons living with dementia can encourage these persons to learn to strive, and maintain meaningful, independent lives.

Here are two participatory arts programs for persons living with dementia:

Sing Out Loud!

Sing Out Loud! was developed by Esplanade – Theatres on the Bay in partnership with Dementia Singapore in 2016. This programme is built on the belief that the arts is transformative and can be used to promote positive ageing, boost mental wellness, and enhance overall well-being in persons living with dementia, and their caregivers.

It offers a nurturing platform for participants to learn new vocal techniques and helps stimulate emotional and memory recall through the reminiscence of songs, culminating in a graduation showcase at the end of the eight-week programme. Each session is low in intensity, making it especially suitable for persons with dementia. It consists of eight vocal sessions stretched over two to four months, and may also include learning simple choreography.

The programme is tailored to suit different levels of physical mobility and participants’ needs, and is facilitated by artists, with inputs from therapists and social service professionals. Participants learn voice projection, breathing techniques, use of the diaphragm as well as facial muscles to control tone and pitch.

Arts & Dementia

Arts & Dementia is a programme initiated by Dementia Singapore for clients from its New Horizon Centres (dementia daycare centres) with the objective of raising the quality of engagement using the person-centred approach to dementia care (PCC).

The Future of Participatory Arts