When dementia becomes nobody’s problem

 

LAST week, I attended a geriatric conference in Kuala Lumpur. During a conversation with a highly respected and compassionate geriatrician, she shared something that has stayed with me.

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.

Ten minutes.

How can anyone properly assess an older person in 10 minutes, let alone someone living with dementia?

Dementia assessment is not a checklist. It requires listening, observing, understanding the person’s history and, often, speaking with family members. It cannot be rushed.

Yet government geriatricians continue to shoulder overwhelming caseloads as Malaysia’s population ages. Dementia cases are rising, but our healthcare system often responds as though the issue can wait.

When families finally realise something is wrong, where do they turn? Who is there to guide them? Countless Malaysians are living with cognitive impairment without ever receiving a diagnosis or the support they desperately need.

Working closely with communities has given me the privilege of witnessing the daily realities faced by people living with dementia and the family members who care for them. Their struggles are often invisible, but they are no less real.

I have also seen another uncomfortable truth.

Many healthcare professionals care for people living with dementia every day without receiving adequate education or specialised training.

During one workshop, I was shocked to hear nurses express the belief that people with dementia no longer have feelings, and that because they may not remember what happened, restraint or rough treatment 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 can remain long after the memory itself has faded.

I have also watched physiotherapists struggle because conventional rehabilitation approaches often fail in dementia care.

Patients are frequently labelled “uncooperative” when, in reality, therapy has not been adapted to the way a person with dementia understands 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 face similar challenges. Many do their best with the knowledge they have, yet receive little or no formal training in dementia care.

Consider this. A barista may spend months learning to prepare the perfect cappuccino, yet professionals entrusted with caring for some of the most vulnerable members of our society often receive little specialised education to provide one of the most complex forms of care imaginable.

Recently, I met with several academic institutions to discuss developing a formal dementia care programme to bridge this enormous gap.

Their response was understandable, but discouraging.

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 also play an important role by creating dementia-inclusive congregations and helping to remove the stigma surrounding this condition.

Yet several religious leaders have shared their hesitation with me. They worry that simply mentioning dementia may 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.

Malaysia is ageing. Dementia is no longer a future problem. It is already part of our present reality.

What does it say about us as a society when those who are most vulnerable remain unseen? What does it say about us when profit determines education, politics determines priorities, and stigma determines whether people receive compassion?

The question is no longer whether dementia matters.

The real question is whether the people living with it matter enough for us to act.

History will judge us not only by the sophistication of our healthcare system or the strength of our economy. It will judge us by how we treated those who could no longer speak loudly for themselves. 

Dr Cecilia Chan is a gerontologist and dementia advocate.

The views expressed are solely of the author and do not necessarily reflect those of  MMKtT.

- Focus Malaysia.