WHEN a parent is diagnosed with Alzheimer’s, it can bring lots of different emotions for the adult child.
Sadness, anger and helplessness all come into play as roles are reversed and children become caregivers. It’s a complex journey of love, patience, and responsibility.
This transition isn’t easy but with understanding, support, and compassion, it can be both meaningful and manageable.
There is a deep emotional weight that comes with caregiving, says Columbia Asia Extended Care Hospital Shah Alam medical officer Dr Yuhanantini Gopal Kishnam.
Alzheimer’s doesn’t only affect the person diagnosed. It reshapes family dynamics, daily routines, and the way you connect with your loved one, she explains.
“As a person’s dementia progresses, they may begin to behave in ways that other people find hard to understand. This can be one of the most difficult aspects of dementia, for the person, for you and for others around you.”
Dr Yuhanantini says these behaviours usually happen when the person is feeling confused, uncomfortable or distressed and trying to make sense of what is happening, or when they are trying to communicate a need.
Looking at the causes of the behaviour and identifying the person’s needs can help to reduce them and support the person.
“Watching a parent gradually lose their memory, independence and sense of self due to Alzheimer’s disease is one of the most profound emotional challenges a child can face.”
This journey is not just about helping with medications or hospital appointments, it’s about navigating grief in real time, finding new ways to connect and learning to live with uncertainty.
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ROLE REVERSAL
Dr Yuhanantini says the child may grieve the “loss” of the parent he once knew even though the person is still physically present. There may also be feelings of guilt as they grapple with thoughts of not doing enough for the parent or at times resenting the situation they find themselves in.
These feelings are all common and natural, assures Dr Yuhanantini. Becoming the decision-maker for the person who once guided you can feel overwhelming.
“Daily life can feel like it revolves around checking in, supervising or planning around their needs. Appointments, emergencies and emotional exhaustion can impact your job, relationships and hobbies.”
For the child who’s caring for his ailing parent, even simple activities like going out or relaxing often get replaced by caregiving tasks.
Frustration may set in as the caregiver has to deal with constant repetition or confusion from the patient on a daily basis. As their memory fades, even conversations may feel one-sided.
COPING WITH CAREGIVING
The challenges of caring can mean you don’t have time to do all the things you need to do. Making time for yourself can feel impossible.
However, looking after yourself is important both for your own health and wellbeing and to help you carry on caring, says Dr Yuhanantini.
“It is important to find the right support and to find ways of taking care of your own needs.”
Taking regular breaks from caring is important for wellbeing too, she adds, whether it’s for an hour or two or for days or weeks. Getting respite and making time for yourself would mean you are better able to support the person you are caring for.
“Try to make time to do something you enjoy every day, whether it is on your own or with the person you are caring for.”
More importantly, look after your own health as caring can have a big impact on your mental and physical health and wellbeing.
STRATEGIES FOR CAREGIVING
*Meet them where they are, not where you wish they were
Instead of correcting their confusion or trying to bring them “back to reality”, try entering their reality. If they think it’s 1972, go along with it unless it causes distress.
*Avoid saying “Don’t you remember?” or “I just told you that”
These phrases increase frustration.
*Respond to the emotion behind their words more than the accuracy of the facts
This approach reduces anxiety, prevents conflict and builds trust.
*Create familiarity through routine and environment
Consistency helps the patient feel secure. Familiar sights, sounds, and schedules reduce confusion and agitation.
*Keep daily routines simple and predictable
Meals, bathing and bedtime at consistent times.
*Surround them with comforting items
Family photos, favourite music, their own furniture or bedding.
*Accept help
Many caregivers fall into the trap of believing they must manage everything themselves. But Alzheimer’s is a long journey and shared responsibility prevents burnout. Delegate tasks to family members or consider professional respite care or home nursing for breaks.
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ALZHEIMER’S – THE FACTS
ALZHEIMER’S is the most common cause of dementia. It’s a neurodegenerative disease that affects the brain, damaging and destroying cells in the brain over time. Eventually, people with Alzheimer’s lose some of their brain functions, including memory and language.
About 8.5 per cent of older adults aged 60 plus are estimated to have dementia in Malaysia according to the National Health and Morbidity Survey 2018.
With Alzheimer’s accounting for 60 to 70 per cent of dementia cases globally, many of those with dementia in Malaysia will be Alzheimer’s patients.
There is still a lot of stigma and misunderstanding surrounding dementia in our communities, says Dr Yuhanantini.
Many families wait too long to seek help, believing memory loss is just a normal part of ageing. Others face financial strain or emotional burnout from trying to manage care on their own.
PERSONALITY SHIFT
SOME of the most common behavioural changes in people with dementia include:
*Repetition of questions or actions
*Aggression
*Agitation, including restlessness
*Shouting and screaming
*Sleep disturbances and waking up at night.
These behaviors are sometimes known as “behaviours that challenge”. This is because they can bring challenges to both the person with Alzheimer’s and those who support them.
© New Straits Times Press (M) Bhd
