My Loved One Has Dementia Archives - DementiaHub.SG https://www.dementiahub.sg/loved-one-has-dementia-category/my-loved-one-has-dementia/ Singapore’s One-Stop Resource Portal on Dementia Thu, 21 May 2026 07:27:08 +0000 en-US hourly 1 https://www.dementiahub.sg/wp-content/uploads/2022/06/fav.png My Loved One Has Dementia Archives - DementiaHub.SG https://www.dementiahub.sg/loved-one-has-dementia-category/my-loved-one-has-dementia/ 32 32 Caring Through Vision Loss: Insights from Dementia Caregivers https://www.dementiahub.sg/living-well-with-dementia/caring-through-vision-loss-insights-from-dementia-caregivers/ Wed, 06 May 2026 00:24:20 +0000 https://www.dementiahub.sg/?post_type=dementia&p=83377 Visual impairment and dementia may significantly impact independence, communication, and quality of life of Persons Living with Dementia (PLWD). In this article, we also have care partners Lybea Lau and Rosalind Chan share practical insights and strategies for managing visual loss in PLWD.

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Visual loss is a common age-related condition. For people living with dementia, visual impairment can compound cognitive challenges, affecting independence, communication, and quality of life. 

This article features how visual loss can impact persons living with dementia (PLWDs) and practical tips from care partners Lybea Lau and Rosalind Chan, on managing visual loss in PLWDs. 

In this Article

  1. Health Promotion Board. (n.d.). Let’s talk about Vascular Dementia. HealthHub. https://www.healthhub.sg/programmes/mindsg/vascular-dementia  
  2. 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  
  3. Ng, Z. X., Yang, W. R. E., Seet, E., Koh, K. M., Teo, K. J., Low, S. W., Chou, N., Yeo, T. T., & Venketasubramanian, N. (2015). Cerebellar strokes: A clinical outcome review of 79 cases. Singapore Medical Journal, 56(03), 145–149. https://doi.org/10.11622/smedj.2014195  
  4. Ioannides K, Tadi P, Naqvi IA. Cerebellar Infarct. [Updated 2022 May 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470416/  
  5. Huang, J., Qiu, Z., Zhou, P., Li, J., Chen, Y., Huang, R., Li, C., Ouyang, X., Feng, H., Xu, H., Liu, D., Dai, Z., Zhu, J., Liu, X., Chen, H., & Jiang, Y. (2019). Topographic location of unisolated pontine infarction. BMC Neurology, 19(1), 1-6. https://doi.org/10.1186/s12883-019-1411-6  

Introduction ​

Visual loss is often characterised by specific patterns of sight degradation, mainly due to conditions like age-related visual loss (ARVL), cataracts, glaucoma, and diabetic retinopathy. A study by Singapore Eye Research Institute (SERI) found that about 43% of older adults in Singapore have visual impairment, often from treatable causes, while up to 90% of those with conditions such as age-related macular degeneration and diabetic retinopathy remain undiagnosed. 1.

Understanding Visual Loss in Late Life ​

Most visual loss in older adults commonly arise from three categories: 

Visual loss alone

Caused by a condition or disease of the eye. The most common eye diseases are age-related macular degeneration (AMD), glaucoma, and cataracts.2 

Disease related visual loss

This is where another disease leads to someone developing vision loss e.g. diabetic retinopathy. Diabetes is also a risk factor for dementia.  

Neurological visual loss

This is when loss of vision occurs due to neurological causes, such as problems with the nerve cells in the eye or the brain.

Dementia-Related Visual Difficulties ​

Persons living with dementia may develop visual difficulties during their diagnosis, particularly Alzheimer’s disease, which can directly affect vision. 

For instance: 

  • Visual Processing Impairment: A lesser-known symptom of Alzheimer’s disease is its effect on visual processing and depth perception. 3During one’s diagnosis, the brain regions responsible for interpreting and recognising visual stimuli may slowly start to deteriorate, leading to difficulties with visual perception (e.g., difficulty recognising faces, interpreting spatial information, or judging distances). 
  • Cortical Blindness or Visual Agnosia: Certain types of dementia (like posterior cortical atrophy) can cause visual agnosia. This form of agnosia is an atypical non-memory form of Alzheimer’s disease. 4 This can cause individuals lose the ability to recognise objects, even though their eyes are functioning well.  

How Visual Loss Impacts Persons Living with Dementia ​

Persons living with dementia who also experience visual loss face significant challenges in performing everyday tasks. Caregivers Lybea Lau and Rosalind Chan share how visual impairment can complicate everything from eating to walking. 

Rosalind
Lybea

Rosalind Chan, care partner to her husband Darren, who was diagnosed with Alzheimer’s disease and has experienced deteriorating vision. 

Lybea Lau, care partner to her husband Andy, who is currently living with dementia and glaucoma. 

Loss of Safety and independence

Early studies suggest persons living with dementia experiencing visual loss may experience a loss of safety and independence.5 The inability to compensate for poor memory with visual cues impaired their loved one’s ability to manage everyday tasks. 

For Lybea, her husband Andy’s glaucoma has increased his need for assistance with basic activities, such as dressing, grooming, and even eating. This loss of autonomy led to frustration and a decrease in confidence, making it harder to carry out day-to-day tasks without help. 

Similarly, Rosalind shared that visual loss has intensified her husband Darren’s fear of moving around alone safely.  

Heightened Disorientation and Distress

Disorientation is another key impact of visual loss in persons living with dementia. Research suggests, when vision declines, it becomes harder to recognise familiar places and people, which can lead to anxiety and distress. 5 Lybea’s husband Andy tends to become increasingly anxious in public spaces, especially when surrounded by crowds. 

Likewise, Rosalind notes that Darren’s difficulty with spatial awareness makes it harder for him to process instructions which increases his anxiety. This also makes Rosalind more cautious when guiding Darren. 

Vulnerability to Isolation

Visual loss has also found to lead to isolation.5 Persons living with dementia may have reduced ability to engage in activities such as social outings, games or previous hobbies, resulting in withdrawing themselves from these social interactions. Both Lybea and Rosalind observe that their loved one’s struggle with confidence in social settings due to difficulty engaging in activities they once enjoyed. 

Care Partner Perspectives: Real-Life Tips ​​

Caregivers supporting a loved one through gradual visual loss can feel overwhelmed and deeply personal. Care partners, Lybea and Rosalind, share their experiences and tips in navigating this path.

Environmental Adjustments  

Creating a safe, navigable environment helps maintain independence and reduce accidents: 

  • Install grab bars in bathrooms and at main entrances. 
  • Keep floors dry and walkways free of furniture, wires, and other obstacles. 
  • If your loved one has glaucoma keeping lights on in key areas, such as hallways and bathrooms, especially at night. 
  • Keep the bathroom floors dry to prevent falls and slips. 
  • Use adaptive devices such as nightlights or motion sensor lights, strategically located for night-time safety. 

Caregiver Insights

  • Keep the house brightly lit and minimise clutter, especially in areas your loved one frequents. It helps them feel more confident moving around. –Rosalind Chan, Care Partner  
  • Carry a torch when going out at night and provide guidance in advance for steps or uneven terrain. – Lybea Lau, Care Partner 

Daily Life and Routine Adjustments 

Routine tasks may need additional support or modification: 

  • Assist with tasks such as dressing, grooming, eating, and mobility, particularly when vision is limited. 
  • Walk closely beside the person or hold their hand for reassurance and stability.  
  • Provide clear, step-by-step directions and encourage trust in guidance to reduce anxiety and prevent disorientation. 
  • Encourage your loved ones to engage in activities they enjoy while they still have usable vision. 

For example, Rosalind shared that Darren enjoys singing, so she encouraged him to read song lyrics and follow lip movements while singing. Practising these activities early can help build familiarity and muscle memory as vision declines. 

Tips from Rosalind, Care Partner

  • Encourage your loved one to touch and feel objects, which helps compensate for limited vision. 
  • Instructions will not always be verbal. Sometimes caregivers must guide and steady them by holding their hand when using stairs or escalators. 

Preventive and Supportive Measures 

  • Encourage regular eye check-ups for early detection of eye diseases like glaucoma early. 
  • You can self-check your vision with the EySEE application which simulates how a healthcare professional would check the Visual Acuity of a person. Click here for more information. 
  • Individuals with diabetes are at higher risk of vision loss and eye diseases. Attend scheduled eye examinations diligently. 

Tips from Lybea, Care Partner

  • Check for any known family history of eye diseases to anticipate potential challenges. 

Key Takeaways for Caregivers 

  • Reassure your loved ones and encourage them to trust your guidance. 
  • Emotional reassurance reduces anxiety in unfamiliar or busy environments. 
  • Environmental modifications significantly improve safety and independence. 
  • Regular medical follow-ups can prevent or decelerate further vision loss. 

Conclusion

For people living with dementia, visual impairment can compound cognitive challenges, affecting independence, communication, and quality of life. Lybea Lau and Rosalind Chan’s experiences show how combining practical strategies with emotional reassurance can preserve dignity, confidence, and connection for persons living with dementia experiencing visual loss.

References

  1. Teo, J. (2026, February 24). Most older Singaporeans unaware of eye disease, study finds. The Straits Times. https://www.straitstimes.com/singapore/health/over-1-in-3-seniors-have-undiagnosed-eye-disease-1-in-5-have-serious-hearing-loss-study
  2. Singapore Association of the Visually Handicapped. (n.d). Common Eye Diseases. SAVH. https://savh.org.sg/common-eye-diseases/ 
  3. Rauch, K. (2022, July 26). Alzheimer’s Disease, Dementia and the Eye. American Academy of Ophthalmology. https://www.aao.org/eye-health/diseases/alzheimers-disease-dementia-eye
  4. Murray, E., M. (2024, April 15). When Alzheimer’s Disease Begins with Vision Problems. Alzheimer’s Disease Research. https://www.brightfocus.org/resource/when-alzheimers-disease-begins-with-vision-problems/
  5. Lawrence, V., Murray, J., Ffytche, D., & Banerjee, S. (2009). “Out of sight, out of mind”: A qualitative study of visual impairment and dementia from three perspectives. International Psychogeriatrics, 21(3), 511–518. https://doi.org/10.1017/S1041610209008424
  6. Singapore National Eye Centre (n.d). EySEE- Self Check Eye Test. SNEC. https://www.snec.com.sg/patient-services/e-services/eysee 

Read Next

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]]> Counselling for Caregivers https://www.dementiahub.sg/supporting-caregivers/counselling-for-caregivers/ Fri, 20 Mar 2026 02:12:16 +0000 https://www.dementiahub.sg/?post_type=dementia&p=80891 Counselling can provide guidance, emotional support, and practical coping strategies for caregivers at every stage of their dementia journey.

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When caring for your loved one with dementia, you may come across counselling as a source of support. However, deciding to speak with a counsellor can feel challenging, especially if you are unsure of what to expect or how it might benefit you.

This article discusses how counselling can help caregivers in different stages of dementia, ways to approach counselling, and where to find counselling services in Singapore. 

In this Article

How Counselling Supports the Dementia Caregiving Journey

As dementia progresses, the needs of caregivers can bring feelings of uncertainty, grief and anger. With growing caregiving responsibilities, caregivers may find it harder to prioritise their wellbeing. Over time, this can potentially lead to adverse effects such as burnout, compassion fatigue or stress. Counselling can help caregivers maintain their wellbeing throughout the different stages of dementia by providing a listening ear and emotional support.1

Counselling for Caregivers for Early-stage Dementia

Caregivers may feel stressed or concerned as they try to accept their loved ones’ diagnosis and to figure out how best to support them. This includes how to make their home dementia-friendly and sharing caregiving responsibilities with their family members.  

At this stage, it is also common to start thinking about finances and work arrangements. Caregivers may also want to consider making a Lasting Power of Attorney (LPA). This ensures financial and healthcare decisions are made according to their loved ones’ wishes if they lose the ability to make decisions. 

During this transition into their caregiving roles, counselling may help in understanding and processing unpleasant emotions as they come to terms with their loved ones’ diagnosis. Support may also be provided in the form of dementia education, which may be helpful for caregivers who are unfamiliar with dementia.2

Counselling for Caregivers for Middle-stage Dementia

Caring for one’s loved one with middle-stage dementia demands more responsibilities. The person with dementia may go through behavioural changes and further cognitive decline, thus requiring more support in handling daily activities such as showering, using the toilet, and getting dressed.3

Caregivers may need to set aside their own priorities to take care of their loved ones.4
 At this stage, they may also consider bringing in a domestic helper for support.   

With the increased responsibilities, caregivers may feel more stressed and struggle with their loved ones’ changing needs. Caregivers may also face a loss of boundaries and not having enough time for themselves to unwind. Counselling can help to develop personalised coping strategies, manage other forms of stress, make time for themselves, and seeing situations from a different perspective.  

Counselling for Caregivers for Late-stage Dementia

Persons with late-stage dementia require their caregivers to continuously manage and supervise their daily needs, as their abilities decline further. These include extensive assistance in walking, verbal communication, and eating.5 They may also struggle with remembering familiar faces.6
 As a result, connecting with their loved ones can be challenging, leaving caregivers feeling upset, discouraged or grief. 

During this stage, caregivers often have to make difficult decisions, such as end-of-life matters.7
This may include discussions on palliative care and alternative living options, such as nursing homes or hospice care. Making these decisions can lead to guilt from thinking that caregivers are not doing enough for their loved ones. However, they may also feel relief at the same time.  

These mixed feelings are often accompanied by grief as their loved ones’ life draws to a close. As such, counselling can provide a safe space for caregivers to process different forms of grief such as anticipatory grief, handle difficult decisions, and provide emotional reassurance, during this last lap of caregiving. Counselling also supports caregivers in looking towards the future after their loved ones pass on. 

How to prepare for the first counselling session?

Think about what you want to talk about and to achieve from counselling beforehand.

Useful Prompts:

•Is there a specific event or incident you wish to bring up?

•Are there feelings and thoughts that have been bothering you?

•Are there any patterns of behaviours you have noticed about yourself that could be of concern?

•Are there any areas of your life that has been impacted?

 Knowing what you want to achieve from counselling can help you in expressing your needs to your counsellor, making it a more fruitful and meaningful session.

To guide you along, especially during your first session, your counsellor may ask personal questions to get to know you better. This may include setting of counselling goals, counselling frequency, and questions about your family history. 

Keep an Open Mind

It may take time for you to see progress in your counselling journey. It is important that you remain patient and approach each session with an open mind. One session may not resolve the issues you are facing, and it is helpful to remember that progress in counselling is rarely linear.  

Approaching sessions with an open mind to new ideas, such as trying new coping strategies, can help you discover more effective selfcare or caregiving approaches. 

Be Ready to Share Your Inner Feelings and Thoughts

Counselling can be a daunting experience for those who are not comfortable with sharing their emotional state with strangers or acquaintances. During your first counselling session, you may feel uneasy or struggle to speak about your experiences to your counsellor. 

This is part of the counselling journey. As your rapport with your counsellor develops, it can become easier for you to open up to your counsellor.    

Relaxing activities can help alleviate uncomfortable feelings that arise. You could make yourself some tea or read a book to relax and unwind.  

Joining caregiver support groups can also give you a dedicated space to share your feelings and connect with other caregivers who can relate to your experiences.

Types of Counselling and Where to Find Them

 

Types of Counselling 

Where to Find Them 

Helplines 

 

These helplines provide quick support for caregivers over the phone. This can be done in the comfort of your home in case you need to be home for the person living with dementia. 

Dementia Singapore (Mon-Fri: 9am-6pm, Sat: 9am-1pm): 6377 0700 

Samaritans of Singapore (SOS) (24-hours): 1800-221-4444 

CREST-CSN 

Caregiver Support Network Community Outreach Team (CREST-CSN) specialises in providing support services for caregivers: 

mindline.sg | Free Mental Health Resources & Mindfulness Tools in Singapore 

COMIT 

Community Intervention Team (COMIT) provides mental health support which include counselling for caregivers. There are over 100 teams in Singapore, making it accessible for caregivers: 

Community Intervention Team (COMIT) – SupportGoWhere 



Conclusion

Caregiving for a loved one with dementia is a meaningful yet challenging journey, and your wellbeing matters just as much as that of your loved one. Seeking support from counsellors and other support services is a sign of strength. It is by taking care of your own wellbeing that you can continue to provide care for and preserve the dignity of your loved one. Regardless of where you are in your caregiving journey, you deserve the support, and counsellors are ready to support you every step of the way.

Additional Resources

Available Assistance- Dementia Singapore

Support and Services 

References
  1. Caregiver Support Singapore: From Overwhelm to Empowerment. (2025, October 27). In Focus. https://www.in-focus.com.sg/caregiver-support-singapore-mental-health-wellbeing/ 
  2. Siow, D. (2008). Managing the caregiver from the general practitioner’s (GP’s) perspective. https://www.cfps.org.sg/publications/the-singapore-family-physician/article/376_pdf
  3. Ali, S., & Bokharey, I. Z. (2016). Caregiving in dementia: Emotional and behavioral challenges. Educational Gerontology, 42(7), 455–464. https://doi.org/10.1080/03601277.2016.1156375
  4. Alzheimer’s Society (2021). The middle stage of dementia. https://www.alzheimers.org.uk/about-dementia/stages-and-symptoms/middle-stage-dementia
  5. Clifford, K., Moreno, M., & Kloske, C. M. (2024). Navigating late-stage dementia: A perspective from the Alzheimer’s Association. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, 16(1). https://doi.org/10.1002/dad2.12530 

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]]> PAL Series: Supporting Persons Living with Dementia at a Planned Level https://www.dementiahub.sg/living-well-with-dementia/pal-series-supporting-persons-living-with-dementia-at-a-planned-level/ Sat, 28 Feb 2026 00:25:18 +0000 https://www.dementiahub.sg/?post_type=dementia&p=80322 Discover how to meaningfully engage people living with dementia at the planned level using the PAL Tool. Learn how to create enriching, personalized activities that support independence, dignity, and joy

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The Pool Activity Level (PAL) Instrumental Tool1 is a framework designed to support individuals living with dementia. This article is the second installment to the PAL Series that discusses how to support persons living with dementia in the mild stages of dementia, who are usually in the Planned stage of the PAL tool. Learn more about tailoring activities for your loved ones’ cognitive and functional abilities.

  1. Health Promotion Board. (n.d.). Let’s talk about Vascular Dementia. HealthHub. https://www.healthhub.sg/programmes/mindsg/vascular-dementia  
  2. 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  
  3. Ng, Z. X., Yang, W. R. E., Seet, E., Koh, K. M., Teo, K. J., Low, S. W., Chou, N., Yeo, T. T., & Venketasubramanian, N. (2015). Cerebellar strokes: A clinical outcome review of 79 cases. Singapore Medical Journal, 56(03), 145–149. https://doi.org/10.11622/smedj.2014195  
  4. Ioannides K, Tadi P, Naqvi IA. Cerebellar Infarct. [Updated 2022 May 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470416/  
  5. Huang, J., Qiu, Z., Zhou, P., Li, J., Chen, Y., Huang, R., Li, C., Ouyang, X., Feng, H., Xu, H., Liu, D., Dai, Z., Zhu, J., Liu, X., Chen, H., & Jiang, Y. (2019). Topographic location of unisolated pontine infarction. BMC Neurology, 19(1), 1-6. https://doi.org/10.1186/s12883-019-1411-6  

What is the Planned Level

The Planned Level of the PAL tool describes those at the earliest stage of dementia. At this Level, persons living with dementia can still carry out well-rehearsed tasks and routines with structure and support, but they need prompts and environmental cues to stay on track.  

For instance, they can go to the market or coffee shop to buy their daily meals. However, if there are changes to the shop, such as its location, they may face difficulty orienting themselves.  

Below is an example of how to identify if your loved one is at the Planned Stage: 

Level
Person Living with Dementia
Example (Getting Dressed)
Role of Caregiver
Planned Level
Plan and carry out familiar tasks independently
Plans what to wear; selects own clothing from cupboard; dresses in correct order 
Encourage autonomy with minimal guidance 

What should Caregivers Do?

The following shares how, as a caregiver, you can support your loved one living with dementia at the Planned Level: 

1. Provide Structure and Routine

  • Stick to a familiar schedule to reduce confusion and anxiety. Consider providing an activity schedule or timetable for your loved one to know what is expected throughout the day. Place it in an area visible and frequented by your loved one. 
  • Engage them in activities that follow established patterns, such as making a cup of Milo, folding laundry, or gardening. 
 
  • Use step-by-step instructions, repeating as needed. Provide 2-3 steps instruction, giving verbal promptings if required. For example, “Pour the powder in the cup” (pause) “Let’s add the water now.” 

2. Use Environmental Cues

  • Label cupboards and rooms with pictures and simple words. 
  • Keep commonly used items in consistent, visible places that are easy to reach, such as a low cabinet. 
  • Use visual aids or colour codes to indicate steps.
    • For example, using matching colors on keys and the items they unlock.

3. Offer Guided Participation

  • Let them initiate the activity, when possible, and try to join in as a collaborator rather than an instructor. 
  • Use verbal prompts, gestures, or demonstrations when they hesitate or forget what to do next. 
  • Encourage independence with supervision, intervening only when necessary. 
    • For example, if the person living with dementia has been regularly cooking, caregivers can make sure their loved one is within sight during that activity to ensure safety and intervention when required. 

4. Choose Familiar and Purposeful Activities

  • Select tasks they used to do regularly, such as setting up the table, sorting items, or simple craftwork such as knitting or sewing. 
  • Focus on the process of doing the activity, rather than completing it perfectly. 
  • Social activities like taking a walk in the park or sensory and creative activities like sing-along sessions and gardening are ideal. 

5. Communicate Simply and Positively

  • Speak slowly, clearly, and use simple, familiar words. 
  • Offer praise and encouragement, reinforcing their effort and participation. 
  • Avoid correcting or criticising — redirect gently if they are off track. 

Use familiar words

”Its time to eat now”

”We can go soon”

Praise and encouragement

”That looks great, you are a good painter. Thank you for helping me”

Avoid correcting or criticising

”I like the design, why don’t we try a different method for the next one?’

6. Minimise Distractions

  • Create a calm, clutter-free environment. 
  • Reduce distracting background noise and unnecessary sensory inputs such as glaring lights to help them focus. 

Matching support to your loved one’s current cognitive abilities may preserve dignity, promote engagement, and reduce frustration or behavioural challenges for your loved ones. At the Planned Level, the goal is to empower them to continue participating in meaningful tasks/activities. 

Activities for Planned Level

Activities should be person-centered and adapted to their past interests, preferences, and current abilities. When supported appropriately, individuals at the Planned Level can still find joy, purpose, and connection through these daily experiences. 

Conclusion

These activities provide your loved one living with dementia a sense of autonomy while playing to their strengths. 

References

  1. Pool, J. (2022). How to support people living with dementia at the Planned level. CaringTimes. https://caring-times.co.uk/feature/how-to-support-people-living-with-dementia-at-the-planned-level/
  2. Pool, J. (2012). The Pool Activity Level (PAL) Instrument. Jessica Kingsley publishers, London. https://www.dailysparkle.co.uk/wp-content/uploads/2022/04/PAL-Guide-for-Activity-Provision.pdf 

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]]> Making a Change by Using Person-Centred Language and Imagery for Dementia https://www.dementiahub.sg/living-well-with-dementia/making-a-change-by-using-person-centred-language-and-imagery-for-dementia/ Fri, 31 Oct 2025 06:51:28 +0000 https://www.dementiahub.sg/?post_type=dementia&p=74349 Using the right language consistently when talking about dementia or people living with dementia can go a long way in combatting negative societal attitudes and creating a truly inclusive society.

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Using the right language consistently when talking about dementia or people living with dementia can go a long way in combatting negative societal attitudes and creating a truly inclusive society. Recognising this, Dementia Australia released a set of language guidelines in 2018. Since then, a growing number of organisations and social service agencies have advocated for the use of person-centred language when talking about people who live with dementia. However, perhaps due to insufficient public awareness or the inconvenience involved in using longer terms, adoption of person-centred language is still limited.

Why does using person-centred language matter?

Language use has a significant impact on not just the way others view or treat people living with dementia, but also how people living with dementia perceive themselves and their relation to others. Many terms used to describe dementia and people with a dementia diagnosis are based on outdated or inaccurate understanding of the disease.

Common stigmatising local terms associated with dementia

Language frames our understanding of dementia as a disease and its root causes. Frequently using terms that describe its causes incorrectly or ascribe blame creates bias, which also fuels stigma. Cultural stigma is a set of “negative beliefs, prejudices and discriminatory structures” shared by a society (Link et al., 2001). The perception of dementia as something that needs to be hidden affects a person’s willingness to seek diagnosis, which limits their access to care options and support. This is concerning because early diagnosis and treatment can greatly improve outcomes for dementia.

People living with dementia may internalise stigma about their condition, which affects their self-esteem and well-being. This can cause them to withdraw from social interaction, which worsens dementia progression. Instead, using person-centred language encourages agency for persons living with dementia to manage their condition.

Stigmatising imagery used in the portrayal of dementia

A large-scale thematic analysis of books, films, television programmes, social media, and news items, conducted in December 2017 and updated in January 2019, revealed several common themes in depictions of dementia that may perpetuate cultural stigma.

There is often an emphasis on the biomedical framing of the disease and brain deterioration, compared to a holistic view of how dementia changes the lived experience of the person. The address “person living with dementia” is preferable to “Alzheimer’s patient” because dementia is a long-term condition. It is more helpful to focus on living well with dementia after their diagnosis than focusing on their status as a patient, since there is currently no known cure for dementia.

Dementia is also often likened to a natural disaster or epidemic, using metaphors like “rising tide” and other apocalyptic terms. This enforces the view that dementia should be feared and that people living with dementia are passive victims of the condition, when in fact progression can be prevented with social interaction and cognitive engagement. The term “epidemic” also implies that dementia is contagious, which encourages misperception of dementia and avoidance of persons living with dementia.

This not only causes undue public fear of persons living with dementia, but it also ascribes blame to the person and undermines public awareness efforts of dementia prevention.

Other terms often used include “victims” or “sufferers”. These terms limit our view of people living with dementia to that of requiring pity or compassion, rather than being able to contribute meaningfully. Images used to depict dementia often portray persons with dementia as an ‘empty shell’ or as a disembodied set of hands, which dehumanises the person living with dementia and decreases emotional connection to them.

In a survey of persons living with mild dementia, 46% were reluctant to share their diagnosis because of concerns that they would be “talked about like they were not there” (Burgener and Buckwalter, 2018). When people do not understand dementia, they are more likely to exclude persons living with dementia from conversations and instead speak directly only to caregivers. Hence, we can expect that increasing public awareness will increase the inclusion of people living with dementia. 65% of visitors to the “People of Dementia” blog, which published personal stories of people living with dementia and how life was like for them before and after the diagnosis, agreed that they felt more comfortable interacting with persons living with dementia after reading the blog (Jamieson et al., 2017).

 

Terms to Avoid

Preferred Terms

Why this term needs to be avoided and changed

Orang gila (“crazy person” in Malay)

Orang yang menghidapi demensia

Dementia is not a form of psychosis, although some forms of dementia may cause people to experience hallucinations.

Demented

Living with dementia

Gone case

Changed behaviours

It implies that the person living with dementia is beyond help, when symptoms can actually be managed with care.

Menggila (“out of control” in Malay)

Expressing unmet needs

Behavioural symptoms can often result from an inability to express unmet needs.

unpredictable

siao (“acting crazy” in Mandarin)

Senile

Diagnosed with dementia

This term inaccurately implies that dementia is because of old age.

痴呆症

(a derogatory term use to describe dementia in Mandarin）

Dementia

This term implies that people living with dementia are unintelligent and absent-minded. Especially in the early stage of dementia, disorientation is an occasional state rather than a characteristic.

 

How do we use appropriate language when referring to persons living with dementia?

Language used about persons living with dementia should be clear, normal, jargon-free, inclusive, and centred on the person, not the disease. In addition, language can be made more dementia-inclusive by:

  • Using first-person language
  • Eliminating pejorative terms that have negative connotations
  • Choosing inclusive language – acknowledging someone’s circumstances, but avoiding disempowering narratives (e.g. uses a wheelchair vs. wheelchair-bound)
  • Avoiding labels
  • Avoid leading with social identifiers (e.g. race or language)
  • Avoiding language that attributes responsibility to persons for their condition
  • Avoiding verbs that undermine the person’s experience of the disease

(Adapted from Healy et al., 2022)

In the long term, using person-centred language instead of stigmatising language will correct public perception of dementia and reinforce that persons living with dementia should be treated with respect. This includes their inclusion in medical discussions, designing care treatment plans and programmes, and co-participation in research.

Being mindful of the words and imagery we use to talk about dementia and people with dementia, is one of the most important steps we can take as individuals to build a dementia-inclusive society.

Additional Resource

Dementia Language Guidebook 

Dementia Singapore and the Lien Foundation collaborated to produce a dementia language guidebook titled Changing Words, Touching Lives, which was inspired by Dementia Australia’s Dementia Language Guidelines. It lists the preferred words and phrases for describing dementia in Singapore’s context, as well as terms to avoid which are applicable in all situations. This ranges from casual conversation to publicity materials relating to dementia as a disease and persons living with dementia.

References

The post Making a Change by Using Person-Centred Language and Imagery for Dementia appeared first on DementiaHub.SG.

]]> Using the Pool Activity Level (PAL) Tool to Engage Persons Living with Dementia https://www.dementiahub.sg/living-well-with-dementia/using-the-pool-activity-level-pal-tool-to-engage-persons-living-with-dementia/ Wed, 03 Sep 2025 05:40:12 +0000 https://www.dementiahub.sg/?post_type=dementia&p=72242 Engage persons living with dementia with the PAL tool to enrich engagement after their diagnosis.

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The Pool Activity Level (PAL) Instrumental Tool4 is a framework designed to support persons living with dementia. Developed by Dr. Jackie Pool, PAL focuses on tailoring activities to match the cognitive and functional abilities of each person, fostering meaningful engagement.  

This article is the first of four installments that discusses the benefits of PAL and how one can use it informally for persons living with dementia.  

  1. Health Promotion Board. (n.d.). Let’s talk about Vascular Dementia. HealthHub. https://www.healthhub.sg/programmes/mindsg/vascular-dementia  
  2. 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  
  3. Ng, Z. X., Yang, W. R. E., Seet, E., Koh, K. M., Teo, K. J., Low, S. W., Chou, N., Yeo, T. T., & Venketasubramanian, N. (2015). Cerebellar strokes: A clinical outcome review of 79 cases. Singapore Medical Journal, 56(03), 145–149. https://doi.org/10.11622/smedj.2014195  
  4. Ioannides K, Tadi P, Naqvi IA. Cerebellar Infarct. [Updated 2022 May 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470416/  
  5. Huang, J., Qiu, Z., Zhou, P., Li, J., Chen, Y., Huang, R., Li, C., Ouyang, X., Feng, H., Xu, H., Liu, D., Dai, Z., Zhu, J., Liu, X., Chen, H., & Jiang, Y. (2019). Topographic location of unisolated pontine infarction. BMC Neurology, 19(1), 1-6. https://doi.org/10.1186/s12883-019-1411-6  

What is Pool Activity Level Instrumental Tool (PAL)

The Pool Activity Level, or PAL in short, is an evidence-based tool for persons living with dementia. It was developed by Dr. Jackie Pool in 1999 to personalise activities for persons living with dementia.  

PAL is widely used across the community care sector in Singapore 1, such as dementia day care centers and nursing homes. It helps community care providers tailor activities to enhance the well-being and quality of life for persons with dementia, but it can also be used by individuals caring for their loved ones with dementia to scale activities for daily living and recreation. 

How is PAL Used?

Occupational therapists (OTs) often use the Pool Activity Level (PAL) Instrument to support persons living with dementia, by assessing their functional abilities and tailoring meaningful activities accordingly.  

The following describes how one can use the PAL tool in practice: 

Tips

One may observe whether a person can pick up a toothbrush and start brushing without being told, or if he needs help to get started.

1. Determine the PAL Level

​

There are four levels of PAL. To tailor the best activity for your loved one, you should know which level they fall under. 

Level

Planned Level

Persons Living with Dementia Characteristics

Plan and carry out familiar tasks independently.

Examples (Getting Dressed)

Plans what to wear selects own clothing from cupboard; dresses in correct order.

Caregiver Role

Encourage autonomy with minimal guidance.

Exploratory Level

Can follow simple instructions and learn by doing.

Needs help to plan what to wear but recognises items and how to wear them.

Use hands-on, step-by-step prompts. 

Sensory Level

Responds mainly to sensory stimuli (i.e music) 

Needs help to plan, and with order of, dressing, but can carry out small tasks if someone directs each step. 

Offer tactile, auditory or visual input.

Reflex Level

Reflexive, mostly involuntary responses (i.e massage) 

Totally dependent on someone to plan, sequence and complete dressing; may move limbs to assist.

Focus on comfort, position, and routine. 

2. Activity Planning and Grading

Based on the person’s PAL level, one should: 

  • Ensure activities are something the person enjoys (cooking, painting etc). 
  • Design or adapt activities to match cognitive ability. 
  • Ensure activities are safe, engaging, and doable. 
  • Adjusts task complexity, environment, and instructions. 

Tips

Example one:

For someone at the Exploratory Level, introduce a familiar baking task but break it down into single steps with demonstration. 

Tips

Example two:

For a person at the Exploratory level, offer hand-over-hand assistance to get the person to water the plants at a garden. 

Tips

Example three:

For a person at the Planned level, encourage full participation from planning to execution of a simple cooking task

i.e. cooking fried rice, providing verbal promptings when required. 

3. Review and Reassessment

It is advisable to continually:

  • monitor for changes in function or cognitive status; 
  • adjust the PAL level and revise activity plans as needed; and 
  • use PAL as a dynamic tool, not just a one-time assessment. 

Tips

When someone who was at the Exploratory level is now unable to perform a painting task with guidance, consider getting the person to run his or her fingers over textured surfaces.

These simple actions provide a strong foundation of understanding persons living with dementia. One can also speak to an OT and care staff to better understand their loved one’s abilities. 

Benefits of PAL for Persons living with Dementia

Research has supported the following areas where PAL can influence meaningful engagement and improve the quality of life (QoL) for persons living with dementia. 

Promotes Person-Centered Care

The PAL tool focuses on what the person can do, rather than their limitations. Activities are tailored to match a persons living with dementia’s current cognitive and functional abilities, making them feel respected, understood, and valued.2 This will boost their self-esteem and emotional well-being. 

Supports Cognitive Engagement

Activities designed at the appropriate PAL level help to stimulate the brain without overwhelming the person living with dementia. It helps to maintain cognitive function for as long as possible by promoting participation in structured, familiar, or sensory-rich tasks. 

Improves Emotional and Psychological Well-being

When tasks are too complex, persons living with dementia may feel distressed, agitated, or helpless.6 PAL ensures tasks are matched to ability, reducing the risk of behavioural challenges and increasing cooperation. This can lead to smoother caregiving interactions. 

Maintains Independence and Functional Skills

PAL preserves daily living skills. It empowers individuals to do as much as they can, with just the right level of support. It also encourages autonomy in personal care, mobility, and leisure where possible. 

Even simple tasks like folding towels or sorting items can reinforce purpose and control for persons living with dementia.  

Enhances Quality of Life Through Meaningful Activity

Activities under the PAL framework are emotionally and socially meaningful, tailored to personal preferences and history.3 PAL promotes occupational engagement based on the interest of the persons living with dementia. Individuals often display improved mood, better sleep, and more stable routines.

 

For example: A person living with dementia who was previously a teacher may find familiarity and engagement in grading papers or word searches compared to other activities. 

Improves Safety

PAL helps therapists and caregivers identify risks based on cognitive level (e.g., poor problem-solving skills, impulsion). Activities and environments can be modified (e.g., simplifying tasks, removing hazards) to prevent injuries.  

Supports Relationships and Communication

Caregivers who understand how PAL works can interact more effectively with persons living with dementia by using appropriate prompts and managing expectations. It reduces miscommunication and preserves the emotional bond between the caregiver and their loved ones. 

Additionally, the PAL tool is effective for persons living with dementia with hearing or visual impairment.5 This helps caregivers adapt activities for sensory loss, making it easier for their loved ones to stay engaged.

Track Progress or Decline

PAL can be re-administered over time to monitor changes in abilities. This supports timely adjustments to care plans and interventions.  

Conclusion

The PAL tool is beneficial in enhancing the quality of life for persons living with dementia. Using a structured approach to understanding a person’s activity level, the PAL tool enables caregivers to tailor care that is meaningful and engaging. It contributes to a greater sense of well-being for persons with dementia. 

References

  1. Agency for Integrated Care (2016). Dementia Care Competency Framework 2016. Agency for Integrated Care. https://www.aic.sg/wp-content/uploads/2023/06/Dementia-Competency-Framework-Assessment-Criteria.pdf 
  2. Groenendaal, M., Smaling, H. J. A., Achterberg, W. P., & Caljouw, M. A. A. (2022). Maintaining meaningful activities for persons with dementia during transitions of care: A systematic review. Geriatric Nursing, 44, 176–183. https://doi.org/10.1016/j.gerinurse.2022.01.017 
  3. Han, A., Radel, J., McDowd, J. M., & Sabata, D. (2015). Perspectives of people with dementia about meaningful activities: A synthesis. American Journal of Alzheimer’s Disease & Other Dementias®, 31(2), 115–123. https://doi.org/10.1177/1533317515598857 
  4. Pool, J. (2012). The Pool Activity Level (PAL) Instrument. Jessica Kingsley publishers, London. https://www.dailysparkle.co.uk/wp-content/uploads/2022/04/PAL-Guide-for-Activity-Provision.pdf 
  5. Wenborn, J., Challis, D., Pool, J., Burgess, J., Elliott, N., & Orrell, M. (2008). Assessing the validity and reliability of the Pool Activity Level (PAL) Checklist for use with older people with dementia. Aging & mental health, 12(2), 202–211. https://doi.org/10.1080/13607860801984375

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]]> FINGER Model – Prevention of Cognitive Decline https://www.dementiahub.sg/living-well-with-dementia/finger-model-to-prevent-cognitive-decline/ Mon, 04 Aug 2025 03:59:10 +0000 https://www.dementiahub.sg/?post_type=dementia&p=71612 FINGER model is a holistic approach that focuses on lifestyle changes rather than medication. It has gained prominence as a proactive measure against cognitive impairment, underlining the significance of lifestyle interventions in maintaining brain health. Its development has paved the way for a shift in how we perceive and address cognitive decline, embracing a more integrated and preventive strategy.

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The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) model is a holistic approach that focuses on lifestyle changes rather than medication. It has gained prominence as a proactive measure against cognitive impairment, underlining the significance of lifestyle interventions in maintaining brain health. Its development has paved the way for a shift in how we perceive and address cognitive decline, embracing a more integrated and preventive strategy.

Understanding Cognitive Decline

Cognitive decline refers to the gradual loss of cognitive abilities, which can affect one’s memory, reasoning, and problem-solving skills. Some cognitive decline is expected with age, but significant cognitive decline can indicate mild cognitive impairment or more severely, Neurocognitive disorders (Dementia). The symptoms often start subtly, like forgetting appointments or struggling with problem solving, but can eventually impact one’s daily life and independence.

It is crucial to prevent cognitive decline to maintain quality of life, allowing individuals to engage fully in personal and social activities. By focusing on prevention, we can delay or even avoid the onset of severe cognitive impairments, ensuring a more vibrant life as we age.

Core Principles of the FINGER Model

The FINGER model is built upon five core components: 

  1. Nutrition: A balanced diet that is rich in fruits, vegetables, whole grains, and lean proteins, which supports cognitive function. 
  2. Physical Activity: Regular activities, such as walking, can improve blood flow to the brain and the growth of new neural connections.
  3. Cognitive Training: Activities like puzzles and memory games can keep the brain active and engaged.
  4. Social Engagement: Such engagement provides mental stimulation and emotional support, which are essential for maintaining cognitive health.
  5. Monitoring Risk Factors Related to Cardiovascular Disorders: Controlling of cardiovascular risk factors like blood pressure, cholesterol, blood glucose, and body weight is also important for brain health.

Each of the above components play a vital role in promoting brain health and preventing cognitive decline.

Implementing Lifestyle Measures to Maintain Social Relationships and Keeping the Brain Actively Engaged

Integrating the FINGER model into daily life does not have to be daunting or reinventing one’s daily routine. One can start with small, manageable changes. For instance, including more fruits and vegetables into meals, or frequent brisk walks. These simple steps can make a significant difference over time.

In addition to mental and social activities, integrating physical exercise into one’s routine is crucial in maintaining overall wellbeing. Regular physical activity does not only improve cardiovascular health it also enhances cognitive function by increasing blood flow to the brain.

Whether it is a brisk walk in a park, a yoga session, or a dance class, find an activity that you enjoy and commit to it regularly. Exercise releases endorphins, which can improve mood and reduce stress level, further supports cognitive health. One should aim for at least 150 minutes of moderate aerobic activity each week, as recommended by health experts.

A balanced diet rich in fruits, vegetables, whole grains, lean proteins, and healthy fats provides essential nutrients your brain needs to function optimally. Foods high in antioxidants, like berries, and omega-3 fatty acids found in fish, such as salmon, are particularly beneficial.

Staying hydrated is equally important, as mild dehydration can affect your concentration and cognitive abilities. One should consider consulting a nutritionist to tailor a diet plan that meets one’s specific needs and preferences, fuelling both your body and mind effectively.

Integrating these lifestyle changes lays a strong foundation for long-term cognitive vitality.

A Promising Approach for Local Dementia Care

Although the FINGER model emerged from Finland, it has been implemented in various studies worldwide, including Singapore. Its adaptation signifies an encouraging trend, highlighting its potential to enhance Cognitive support care for individuals and families locally.

Author’s Bio

Hovi Care provides elderly and elderly and cognitive support care services designed to support seniors in achieving a high quality of life through active ageing and holistic wellness programmes. They combine cognitive, social and physical rehabilitation, to support and to meet individual’s needs.

Website: http://www.hovicare.sg/

  1. Alzheimer’s Society (2025). Anxiety and Dementia. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/anxiety-dementia.
  2. Barrell, A. (2020). Stress vs. anxiety: How to tell the difference. Medical News Today. https://www.medicalnewstoday.com/articles/stress-vs-anxiety
  3. Dementia UK. (October, 2022). Managing anxiety and depression in a person living with dementia. https://www.dementiauk.org/information-and-support/health-advice/managing-anxiety-and-depression-in-a-person-living-with-dementia/

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]]> Managing Anxiety https://www.dementiahub.sg/living-well-with-dementia/managing-anxiety/ Wed, 11 Jun 2025 00:57:24 +0000 https://www.dementiahub.sg/?post_type=dementia&p=69811 Persons living with dementia may display behavioral changes and become more anxious throughout their diagnosis.

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Anxiety is common in persons living with dementia and can make daily life challenging. This article explores the causes and symptoms of anxiety in persons living with dementia and provides practical tips for caregivers to support their loved ones.

What is Anxiety

Anxiety is an emotional response to fear or stress. While feeling anxious is common from time to time, experiencing overwhelming fear or worry is not common.1 Anxiety differs from other related states like stress in persons living with dementia.

Anxiety: Overwhelming worry or fear that interferes with daily life, often related to cognitive decline or changes in daily routine.
Stress: Short-term worry, usually in response to a recognised threat. 2

For persons living with dementia, anxiety often intensifies, making daily tasks and interactions harder. Anxiety is more commonly experienced by persons with Vascular Dementia or Frontotemporal Dementia (FTD) Understanding how anxiety affects them and learning how to manage it can greatly improve quality of life for both the caregiver and the person living with dementia.

Causes of Anxiety

Sometimes, persons living with dementia may display anxiety due to neurological and psychological factors. Some common causes of anxiety are listed below:

Neurological Factors

Damage to parts of the brain that involve emotion regulation:

As dementia progresses, it can affect areas of the brain that are responsible for processing emotions.

Cognitive decline:

Difficulty with memory, and spatial orientation may create fear and anxiety.

Psychological Factors

Fear of the future:

In the early stages of dementia, individuals may become anxious about their future.

Confusion and disorientation:

In later stages of dementia, anxiety may stem from feeling lost or an inability to recognise familiar faces.

Other Contributing Factors

Pain or Discomfort such as physical ailments or hunger:

Physical ailments or even hunger can trigger anxiety in persons living with dementia.

Medications:

Certain medications used for persons with dementia can have side effects that increase anxiety.

Trauma or Past Mental Health Issues:

A history of trauma, abuse, or pre-existing anxiety disorders can make individuals more vulnerable to anxiety.3

Anxiety in persons living with dementia can look different depending on the stage of the condition. In the early stages, anxiety can be due to concerns about the future and the fear of how the condition may worsen. However, in later stages of dementia, anxiety is typically rooted in confusion about the present, such as an inability to recognize one’s surroundings.

Symptoms of Anxiety

It is important to recognise signs of anxiety in persons living with dementia. These symptoms vary based on the individual’s stage of dementia and overall health.

 Common symptoms may include:

  • Restlessness or fidgeting
  • Irritability or frustration
  • Rapid heart rate or trembling
  • Insomnia
  • Increased confusion
  • Feeling constantly ‘on edge’

Supporting Your Loved Ones with Anxiety

Establish a Calm and Predictable Environment

A consistent routine can reduce uncertainty and anxiety. Try to keep daily activities, such as mealtimes, dressing and bathing times predictable and minimise any major changes in the environment. If changes are needed, introduce them gradually. This can help your loved one feel safe, which can reduce anxiety.

Reassurance and Validation

When your loved ones with dementia expresses anxiety, do acknowledge their feelings without judgment.

  • Gently acknowledge their anxiety: “We understand you’re worried, and we’re here to help.”
  • Keep your tone calm.
  • Redirect their attention by using activities they enjoy, like arts or games, to reduce anxious emotions.

Physical Exercises

Accompany your loved ones for regular physical activities, such as walking or gardening to reduce feelings of anxiousness. Encourage them to take part in group sessions, such as dancing or singing.

Relaxation Exercises

Consider guiding your loved ones to participate in relaxation activities, such as arts and crafts or music. Include mindfulness activities in their routines to reduce anxious emotions.

Watch this short mindfulness video to learn simple breathing techniques that can help ease anxiety.

Mindfulness Exercise for Stroke Survivors and Caregivers [English Version]

Source: Agency for Integrated Care

This video demonstrates a 10-step mindfulness exercise customised for stroke survivors, but is also suitable for anyone with affected mobility to manage stress. It takes only 15 minutes to complete all the practices in the video.

Seek Professional Help

If anxiety becomes unmanageable, consult a healthcare provider to adjust care plans or explore medication options.

It is important to note that these strategies may generally be more effective for persons living with early to middle stages of dementia. Your loved one may also want to try complementary and alternative therapies. This can include aromatherapy, acupuncture, or massage therapy.

Do consult a doctor first before participating in any of these therapies. 

Adapted from Alzheimer’s Society and DementiaUK.

Conclusion

Managing anxiety in loved ones can be challenging but with patience and the right strategies, you can help reduce anxiety and improve the quality of life for you and your loved ones.

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References

  1. Alzheimer’s Society (2025). Anxiety and Dementia. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/anxiety-dementia.
  2. Barrell, A. (2020). Stress vs. anxiety: How to tell the difference. Medical News Today. https://www.medicalnewstoday.com/articles/stress-vs-anxiety
  3. Dementia UK. (October, 2022). Managing anxiety and depression in a person living with dementia. https://www.dementiauk.org/information-and-support/health-advice/managing-anxiety-and-depression-in-a-person-living-with-dementia/

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]]> Supporting Instrumental Activities of Daily Living https://www.dementiahub.sg/living-well-with-dementia/supporting-instrumental-activities-of-daily-living/ Tue, 13 May 2025 01:11:43 +0000 https://www.dementiahub.sg/?post_type=dementia&p=68921 Discover practical tips for traveling with dementia, covering planning, packing, routines, and activities to ensure a safe and enjoyable journey for both caregiver and loved one.

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Instrumental Activities of Daily Living (IADLs) are often defined as activities that are learned as an adolescent and that one requires to be fully independent. IADLs often involve more complex tasks and are more cognitively-demanding compared to the basic activities of daily living.

  1. Health Promotion Board. (n.d.). Let’s talk about Vascular Dementia. HealthHub. https://www.healthhub.sg/programmes/mindsg/vascular-dementia  
  2. 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  
  3. Ng, Z. X., Yang, W. R. E., Seet, E., Koh, K. M., Teo, K. J., Low, S. W., Chou, N., Yeo, T. T., & Venketasubramanian, N. (2015). Cerebellar strokes: A clinical outcome review of 79 cases. Singapore Medical Journal, 56(03), 145–149. https://doi.org/10.11622/smedj.2014195  
  4. Ioannides K, Tadi P, Naqvi IA. Cerebellar Infarct. [Updated 2022 May 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470416/  
  5. Huang, J., Qiu, Z., Zhou, P., Li, J., Chen, Y., Huang, R., Li, C., Ouyang, X., Feng, H., Xu, H., Liu, D., Dai, Z., Zhu, J., Liu, X., Chen, H., & Jiang, Y. (2019). Topographic location of unisolated pontine infarction. BMC Neurology, 19(1), 1-6. https://doi.org/10.1186/s12883-019-1411-6  

What are Instrumental Activities of Daily Living?

Instrumental activities of daily living (IADLs) include:

  • Cooking
  • Shopping
  • Communication by phone or email
  • Managing finances
  • Transportation
  • Housekeeping

When a person carries out IADLs, they rely on coordination, judgement and other cognitive abilities that begin to change as dementia progresses. Thus, even in the mild stage of dementia when persons living with dementia are still able to perform other activities of daily living well, they are more likely to struggle with IADLs. It is important to note changes in your loved one’s ability to perform instrumental activities of daily living, as it is often an early indicator of whether your loved one has developed dementia. Prognosis for dementia is greatly improved with early diagnosis and treatment.

Supporting Your Loved Ones in Instrumental Activities of Daily Living ​

You can adapt these activities to suit your loved one’s needs and mobility level.

Using the Phone

Over time, changes to your loved one’s vision and short-term memory for information such as phone numbers may make it difficult for them to contact others over the phone. If they are using a smartphone, there are apps available which can be used to minimise visual noise on the screen display and increase text for easy reading, such as ONY phone. These are often referred to as ‘elder-friendly launchers’. You can also consider making a phone-book or wall poster with their contacts’ photos next to the phone numbers in suitably large font. There are also senior-friendly phones such as the Jitterbug or picture phones.

Picture Phone Dialer

Image: Picture Phone (Picture Dialer Phone Box from HQTelecom)

Managing Finances

Managing bills can be daunting for anyone. Cognitive decline affects judgement and calculation in people living with dementia differently. To support your loved one with this IADL, you can identify specific aspects of finances your loved one is struggling with. This could be forgetting to pay bills on time, overspending or forgetting important information like PIN numbers. You may consider signing them up for automatic bill payments, or setting withdrawal limits. Have a conversation with them to explore methods of working around these issues and affirm aspects of finances they have been managing well.

Managing Medication

Your loved one may have difficulty keeping track of whether they have taken their daily medication, especially if they have been prescribed medication to manage more than one ailment. You can find detailed tips on how to help them manage their medication here.

Housekeeping

Packing and cleaning the house will become more challenging for persons living with dementia over time. Problems with coordination, and the loss of bone density typical of older adult may make it unsafe for your loved one to handle the procedural tasks of housekeeping alone. They may also forget the function and location of housekeeping tools such as the vacuum cleaner.

You can make a list of which regular chores required in the regular maintenance of the house your loved one is still able to manage. You could also consider breaking these chores down into steps, and assist with the steps your loved one has difficulty managing. Identify and remove furniture and items in the house that may be obstacles to your loved one while they are cleaning and ensure hallways are well-lit. Planning a routine together can also help your loved one to keep track of chores they are in-charge of.

Cooking

Cooking may not be safe for persons living with dementia if their coordination and memory are significantly impacted. This may lead to forgetting to turn off the stove or leaving food unattended. Loose clothing like long pajamas may pose a safety risk of catching fire on hot surfaces.

You may gradually need to take over cooking and safety-proof your kitchen (i.e., switching off the gas regulator and using socket covers). If your loved one living with dementia considers cooking to be important or an integral part of their routine, try to keep them involved in the process by asking them to help with simpler tasks. This could include mixing ingredients and washing vegetables. Several senior-friendly or adaptive kitchen tools are designed to make such tasks easier for seniors. Some of these tools may have designs that feel unfamiliar to the person living with dementia (for example, tools that have multiple handles). As much as possible, pick items that resemble tools your loved one is already familiar with. You can also label your kitchen drawers and label tools according to their function to make locating them easier for your loved one.

Image: Chef Craft Measuring Cups with Large Print (Left), North Coast Medical Adjustable Gripping Tool (Center), OXO Good Grips Mixing Bowls (Right)
Shopping

In the mild to moderate stages of dementia, your loved ones may start to feel disoriented in their surroundings and have difficulty calculating change when making payment. If possible, accompany them while they are shopping. You can stay with them while letting them handle as much as they are able to.

It may help to visit shops that your loved one is familiar so that shopkeepers can recognise them, and plan visits for off-peak hours so the environment is less likely to be disorienting. If possible, get support from people living in the neighbourhood, including stall owners at your nearby hawker centre, to look out for your loved one when they are shopping. Try to make a simple shopping list and help your loved ones locate the items where necessary.

Transport

As your loved one’s dementia progresses, their executive function which also involves their ability to concentrate will decline. Driving involves several cognitive demands, such as remembering directions and interpreting traffic signals. Your loved one may be distracted by peripheral traffic or slowed judgement to different signals.  You can assess their comfort with driving and whether it may be necessary for them to seek alternative forms of transport. Find more information on how to aid your loved one in driving and taking public transport.

Conclusion ​

Your loved one may need more support from you and other family members as their abilities change with the progression of dementia. Avoid comparing what they were able to do in the past with what they can do now. Viewing the activity as something you are doing together with your loved one and affirming them when tasks are completed (even if they are not done perfectly) can help to maintain your loved one’s interest and feeling of agency over these tasks. This in turn builds their sense of accomplishment and confidence.

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]]> Tips for Travelling with Dementia https://www.dementiahub.sg/living-well-with-dementia/tips-for-travelling-with-dementia/ Fri, 20 Dec 2024 08:48:29 +0000 https://www.dementiahub.sg/?post_type=dementia&p=63075 Discover practical tips for traveling with dementia, covering planning, packing, routines, and activities to ensure a safe and enjoyable journey for both caregiver and loved one.

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Travelling can still be part of life after a dementia diagnosis. With thoughtful preparation and simple adjustments, persons living with dementia, and their caregivers can continue to enjoy the excitement and joy of a well-deserved holiday. Whether you are revisiting a favourite destination or discovering a new place together, read on for practical tips to help create a smooth and memorable journey for both persons living with dementia and caregivers.

This article also features practical tips and insights from Maya, a passionate traveller and caregiver to her husband, Din, who lives with mild dementia.

  1. Health Promotion Board. (n.d.). Let’s talk about Vascular Dementia. HealthHub. https://www.healthhub.sg/programmes/mindsg/vascular-dementia  
  2. 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  
  3. Ng, Z. X., Yang, W. R. E., Seet, E., Koh, K. M., Teo, K. J., Low, S. W., Chou, N., Yeo, T. T., & Venketasubramanian, N. (2015). Cerebellar strokes: A clinical outcome review of 79 cases. Singapore Medical Journal, 56(03), 145–149. https://doi.org/10.11622/smedj.2014195  
  4. Ioannides K, Tadi P, Naqvi IA. Cerebellar Infarct. [Updated 2022 May 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470416/  
  5. Huang, J., Qiu, Z., Zhou, P., Li, J., Chen, Y., Huang, R., Li, C., Ouyang, X., Feng, H., Xu, H., Liu, D., Dai, Z., Zhu, J., Liu, X., Chen, H., & Jiang, Y. (2019). Topographic location of unisolated pontine infarction. BMC Neurology, 19(1), 1-6. https://doi.org/10.1186/s12883-019-1411-6  

Before Travelling ​

Discuss Travel Interest and Comfort Levels ​

Before making any travel arrangements, it is important to have an open conversation with your loved one living with dementia on how they feel about travelling. This discussion can help you gauge their comfort level and address any concerns they may have about new environments or potential anxieties.

By taking the time to understand their feelings, you can make informed decisions that prioritise their well-being and create a more enjoyable travel experience for both of you.

Consider asking your loved one these questions: 

  • How do you feel about going on a trip? 
  • Is there a particular place you would like to visit? 
  • Would you like to visit a familiar place or try somewhere new? 
  • Are there any activities you would like to do during the trip?  
  • Is there anything else you would like me to keep in mind while we travel? 

Plan Ahead ​

After you have both agreed on the decision to travel, it is essential to start planning. Keep the following aspects in mind to ensure a smooth journey: 

Destination Choice

Choose locations that feel manageable, familiar, or supportive. It is best to avoid overly- crowded or highly- stimulating environments, such as night markets, that might cause distress. Exploring new places can be a rewarding experience, especially when it is thoughtfully planned. Take time to research areas that are accessible, with convenient transport options and necessary amenities to make the journey easier for both you and your loved one.

Mode of Transport

Select the most comfortable and accessible mode of travel. Some might prefer shorter journeys or direct routes to minimise confusion and anxiety. Additionally, opting for straightforward travel options and avoiding complicated connections can help make the journey more manageable and less stressful.

Documents

Make sure you have all the necessary travel documents, such as passports, medical records, and emergency contacts with you.

Pre-Travel Medical Consultation

Consult a healthcare professional to confirm that the person living with dementia is fit to travel. They might provide specific advice on necessary vaccinations, medications, and any special considerations for the trip.

Maya's Tips

• Purchase travel insurance that covers pre-existing conditions.
• Travel with someone or a group of people who understand your loved one’s condition and can assist if needed. 

Packing Essentials ​

Pack a bag of essentials to ensure comfort and minimise anxiety. Consider including: 

  • Medications, with an extra supply if needed 
  • Comfort items, like a favourite blanket or photo 
  • A memory aid, like a written itinerary or visual guide of the trip 
  • A list of emergency contacts and any relevant medical details

Maya's Tips

• Make multiple copies of a formal medical letter or memo from your loved one’s doctor to present during immigration or security checks. This letter can help explain the condition and facilitate special accommodations, such as remaining seated during border crossings. 
• Prepare a comprehensive list of all prescribed medications, including dosages and schedules. Include both generic and brand names for easy sourcing  when needed. 

Whilst Travelling ​

Keep your loved one living with dementia updated

Keeping your loved one updated on where you are going and what you will be doing can help them stay oriented and feel secure. Visual aids or a simple written itinerary with photos can be helpful for reference during the trip. 

Try to maintain routines

Maintaining routines around mealtimes, bedtimes, and medication schedules can reduce stress and provide a sense of stability. Bring along any items that support these routines, such as a travel-sized alarm clock and a pill organiser.

Consider calming aids for travel

Busy or noisy places like airports can be unsettling. If you are travelling by plane, noise-cancelling headphones and familiar music can help provide comfort to your loved one living with dementia. 

Choose activities that are well-suited for your loved one living with dementia

When planning activities during the trip, it is important to choose those that match your loved one’s interests and abilities. Consider these key factors to make the activities enjoyable.  

Maya's Tips

• If you are on a flight, check with the cabin crew about accessible toilets or facilities for persons with special needs.
• Upon arrival, locate the nearest hospital or clinic to your accommodation to ensure you are prepared in case of an emergency.
• Take time to familiarise yourself with the area and transport options. For example, during her trip to Holland, Maya sat at the train station to assess whether it was suitable for Din, who uses a wheelchair.
• Keep your loved one informed during the journey by showing them photos or reminding them of past visits to familiar places.
• Try to maintain familiar routines. For instance, Din enjoys crossword puzzles and reading the Quran on a tablet, which Maya tries to include during their travels.

Conclusion ​​

Travelling with dementia requires extra consideration, but it can still be rewarding and enriching. With open communication, careful planning, and adaptability, persons with dementia and their caregivers can make meaningful memories together while keeping comfort and safety in mind.

Was this article helpful?

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