Time to develop integrative approach to dementia care

Photo: TNS

WHILE attending a geriatric conference in Kuala Lumpur recently, I had a conversation with a highly respected and compassionate geriatrician. She shared that her hospital’s CEO had instructed her to spend no more than 10 minutes with each patient because, in today’s healthcare system, time is money.

That left me thinking: How can anyone properly assess an older person in 10 minutes, let alone someone who may be living with dementia? Dementia assessment cannot be rushed. It requires listening, observing, understanding the person’s history and often speaking with family members.

Meanwhile, our government geriatricians are carrying overwhelming caseloads that continue to grow as Malaysia’s population ages. We all know that dementia cases are increasing. We all acknowledge that the need is real. Yet, our healthcare ecosystem continues to respond as though it is someone else’s problem.

Countless Malaysians are living with cognitive impairment without ever receiving a diagnosis or the support they desperately need. We need to ask ourselves why.

Working closely with communities has given me the privilege of witnessing the daily realities of people living with dementia and the family members who care for them. Their struggles are often invisible to society, but they are very real.

I also see another uncomfortable truth. Many healthcare professionals care for people living with dementia every day without receiving adequate education or training in dementia care.

During one workshop, I was shocked to hear nurses saying that people with dementia no longer have feelings; that because they may not remember what happened, restraining or treating them roughly would not matter.

Nothing could be further from the truth. A person living with dementia may forget an event, but they rarely forget how that event made them feel. Fear, humiliation, loneliness and pain remain long after the memory itself has faded.

I watch physiotherapists struggle because conventional rehabilitation approaches often fail in dementia care. Patients are frequently labelled as “uncooperative” when, in reality, the therapy has not been adapted to the way they understand the world.

As a result, many lose the opportunity for meaningful rehabilitation – not because they cannot improve but because we have not learnt how to help them.

Home care providers often do their best with the knowledge they have, yet many receive little or no formal education in dementia care.

Recently, I discussed the development of a formal dementia care programme with several academic institutions to bridge this gap. There is little demand, they said. It is not marketable. It is unlikely to be profitable.

I understand that universities must meet enrolment targets and financial goals, but if we only teach what is profitable today, who will prepare our workforce for the realities of tomorrow?

Our religious communities could become some of the most powerful places of hope by creating dementia-inclusive congregations. Yet, several religious leaders have shared their hesitation with me. They fear that the very word “dementia” would discourage participation and make people uncomfortable.

That, perhaps, is the greatest tragedy. We are not afraid of dementia itself; we are afraid of talking about it. So today, I find myself standing at this roadblock, wondering where we go from here.

Malaysia is ageing. Dementia is not a future problem – it is our present reality. The question is no longer whether dementia matters; it is whether the people living with it matter enough for us to take action.

DR CECILIA CHAN

Gerontologist and dementia advocate

Penang