Dementia is accompanied by behavioural changes, which affect your loved one living with dementia and all of you around him/her. Behavioural changes can be one of the aspects of dementia that are most difficult to address. Persons living with dementia who experience behavioural changes are often described as having a “completely different personality” from their “old self”. Different behaviour changes occur at different points in mild and moderate stages of dementia, and vary between people and across different types of dementia.
These are some common behaviours exhibited by persons in the mild, moderate, and advanced stages of dementia that vary from person to person:
Mild Dementia
⇒ Forgetting things
⇒ Occasionally repeating themselves
⇒ Isolating themselves from others
⇒ Feeling tired all the time
⇒ Being easily irritated
Moderate Dementia
⇒ Getting lost in familiar places
⇒ Repeating things said
⇒ Problems with communication
⇒ Neglecting personal hygiene and self-care
⇒ Losing track of time & events
⇒ Misplacing items more frequently
⇒ Behavioural disturbances
⇒ Forgetting the names of common objects and familiar people
⇒ Forgetting important events, e.g. birthdays of their children
⇒ Being confused about timings and places
⇒ Poor or decreased judgement
⇒ Problems with abstract thinking
⇒ Swallowing problems
Advanced Dementia
⇒ Losing mobility and ability to perform daily tasks
⇒ Losing ability to communicate
⇒ Food refusal
⇒ Swallowing problems
Sometimes, behavioural changes during mild and moderate stages of dementia can cause concern. Some examples of behaviours of concern that are commonly seen include:
Aggression
Agitation
Being easily upset
Being easily irritable
Being prone to argue
Inappropriate screaming or crying
Refusal to shower or be groomed
Running away from home
Disinhibition
Sexually inappropriate behaviour
Socially inappropriate behaviour
Hoarding
Irregular Night-time Activity (Sundowning)
Getting up at night
Repetitive Behaviours
Sundowning
Anxiety or excessive worry
Apathy or indifference
Delusions and/or hallucinations
Depression
Misidentifying familiar people
Personal Stories
What My Grandmother Was Trying To Say
In this video, Dr. Chen Shiling, who cared for her late grandmother living with dementia, tells us how she has learnt to understand what her grandmother was trying to communicate through many trying episodes and her grandmother’s behavioural changes, which included her making wrongful accusations, wandering behaviour, and depression.
Dr. Chen Shiling is a Resident Physician at Khoo Teck Puat hospital. She was raised by her grandmother who had dementia.
Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore
Where Is My Money?
Episodes involving accusations, arguments, and tension are trying and stressful for family members. Unfortunately, these situations are common in households with persons living with dementia. In this video, Lily tells us her secret to always being able to ‘find’ missing money that has been misplaced by her mother-in-law.
Lily Phang is a caregiver and co-founder of Homage, a caregiving service. She helps her family to cope with the symptoms and behavioural changes that her mother-in-law, Tan Mui Hua faces.
Source: ForgetUsNot Initiative by LIEN Foundation, Khoo Teck Puat Hospital, & Dementia Singapore
Causes of Behaviour Changes
Every individual has needs that need to be met. However, as dementia affects the brain which controls all mental functions and voluntary behaviours including thoughts, emotions, and speech, the progression of dementia may cause your loved one to be increasingly less able to recognise their needs, know how to meet them, or communicate them. In addition to this, behaviour changes also occur due to changes in the brain. The type of behaviour change exhibited depends on the areas of the brain affected by the condition causing the person’s dementia as well.
It is also crucial to understand these behaviours from the perspective of your loved one living with dementia. They may present with these behaviours as a result of their needs not being met, their attempt to meet a need, or an attempt to communicate to individuals around them.
Unmet needs underlying behaviour changes can be generally categorised into the following four factors:
1. Physical Needs: Your loved one living with dementia may be experiencing pain or discomfort, and may be suffering from other illnesses at the same time.
2. Psychological/Cognitive Needs: Your loved one may be depressed or may have other mental health issues. They could also be feeling confused or threatened in an environment that does not seem right or familiar.
3. Social Needs: Your loved one may be feeling lonely, isolated, or bored.
4. Environmental/External Needs: Your loved one may be in an overstimulating environment (e.g., with loud noises or busy environment), or experiencing a different and unfamiliar routine.
Management of Behaviour Changes
When managing your loved one’s behaviours, it is important for you, as a caregiver, to ascertain some factors that may cause certain behaviours to happen. For example:
• What triggers the behaviour: Consider commonly unmet needs, such as constipation, pain, and toileting needs, or environmental triggers such as sounds, smells, and temperature.
• Whether the behaviour is causing distress to the person: If so, prompt treatment may be necessary.
• Whether the safety of the person is compromised: If so, some modifications to the home setting may need to be made to ensure that the environment is safe.
For every behaviour change, it is always good to share the above information you have collected and consult the doctor (geriatrician or psycho-geriatrician) who is seeing your loved one with dementia to rule out any physical health problems (for example, infections, medication side effects) that may be causing it. After ruling these problems out, non-pharmacological approaches should be first attempted to meet your loved one’s unmet needs and minimise or prevent their behaviour changes, before considering pharmacological management.
It is often the daily, non-pharmacological methods and techniques that turn out to be effective in the long-term. Non-pharmacological measures such as psychosocial interventions (e.g., music therapy, art therapy) are usually the first-line approach before medication treatment is considered. Below are some examples of simple, non-pharmacological techniques to consider as well:
1. Revise your approach. The task on hand may be too difficult that it needs to be simplified, or your loved one living with dementia may need some help with it. Help them to focus on their abilities, rather than on their inabilities.
2. Validate your loved one feels. Acknowledge your loved one’s feelings and experience, and patiently communicate this acknowledgement to them by your words and actions. Do not confront or argue – it is not necessary to always correct the person when they are in the wrong.
3. Direct their attention elsewhere. Identify the cause behind the behaviour and address it through engaging your loved one in meaningful activities.
Sometimes, a combination of both non-pharmacological and pharmacological managements may offer better outcomes too. Read further about the Pharmacological Management of dementia and behaviour changes.
Some Tips to Manage Behaviour Changes
In the fifth episode of a 6-part series “All About Dementia – Ask the Experts”, Dr Ng Wai Chong explains why persons living with dementia have changes in their behaviours. He also answers questions related to strategies in managing these behaviour changes, such as wandering behaviour, repetitive behaviour, refusal to take medications, and refusal to eat.
Source: Agency for Integrated Care
The Alzheimer’s Society from the United Kingdom provides general tips to family caregivers on ways to support persons living with dementia to meet their needs and reduce their behaviour changes using a non-pharmacological approach. It also lists a five-step strategy to manage behaviour changes. Read further about Alzheimer’s Society’s tips and strategies.
Finally, it is not easy managing the behaviour change(s) your loved one living with dementia is exhibiting. It is thus equally important that you take good care of yourself by seeking support from family, friends, counsellors or support groups, in order to better cope with your caregiving journey. Learn more about tips and resources on how to look after yourself.