Dementia: Witness to loss and death at a glacial pace

One in 10 people in Singapore aged 60 and above has dementia. Almost all will need caregivers - but the caregiving process can be heartbreaking and caregivers need support.
By Chong Siow Ann, Published The Straits Times, 18 Apr 2015

FOR the greater part of her truncated life, Mrs Augeste Deter had good health. She married a German railway worker and bore him a child. But in her late 40s, she began losing her memory and started behaving strangely.

She would scream late in the night, and trail bed sheets along the streets of Frankfurt.

At his wit's end, her husband had her admitted to an asylum where she came under the care of Dr Alios Alzheimer. Dr Alzheimer was both baffled and fascinated by her and continued to observe her closely over the subsequent years.

"I have lost myself," she told him when she was still able to talk. Her memory and other cognitive abilities deteriorated steadily.

When she finally died in 1906, a post-mortem examination of her brain was carried out. Through the lens of the microscope, Dr Alzheimer saw dense plaques surrounding the nerve cells in the top layer of her brain. In the deeper layers, the finer structures of the nerve cells were disrupted and knotted into tangles. He had found what has persisted till today - the defining biological features of the disease that bears his name.

Dementia is a catch-all term for a group of disorders of which Alzheimer's disease is one of the commonest. Another common dementia is vascular dementia which usually results from repeated strokes.

In general, the causes of dementia are complex and influenced by various interacting factors. The risk of dementia increases sharply with old age. Although exercise and staying mentally and socially active might possibly slow the progression of dementia, the decline is inexorable and inevitable (Doctors sometimes like to use the continuous verb, "dementing", to describe this downward trajectory).

The statistics are bleak.

According to the 2014 World Alzheimer Report, over 44 million people in the world are afflicted with dementia and this figure is projected to double by 2030 and soar to triple by 2050.

Over the next four decades, the number of older people worldwide who need others to care for them will increase about threefold from 101 million in 2010 to 277 million in 2050. Nearly half of these dependent older people are likely to have dementia.

The increasing prevalence of dementia, with the attendant increment in social and economic costs, coupled with the lack of effective drugs, have made dementia a national problem for many countries. The metaphor of a silver tsunami is now a stark reality.

The spectre of this presentiment looms even more hauntingly in a fast-ageing population like ours. My colleagues and I recently released the findings of a three- year Well-being of the Elderly Singapore (WiSE) Study which found that one in 10 people who are 60 years and above has dementia; and almost nine out of 10 of them need a caregiver either some or most of the time.

These caregivers also reported considerable burden of care and have a significantly higher rate of psychological problems than among those caregivers of elderly people without dementia.

Emotional toll of caregiving

DEMENTIA is defined and characterised by loss. The initial loss is that of memory, accompanied by loss of reasoning and planning, loss of orientation in time and space, lack of emotional control, and confusion.

These are manifested painfully in the everyday life of people with dementia. They have problems performing the mundane and minutiae of daily living. Swamped and overwhelmed, the feelings of frustration and humiliation can erupt into a "catastrophic reaction" of panic and violent outbursts.

As the cognitive and functional impairments worsen, a family member or friend would be enlisted to take on a caregiving role - seeing to the person's dressing, feeding, bathing and toileting. Caregivers also need to protect the person from acts that could be embarrassing or even harmful, and from being swindled, robbed or abused by others.

The whole caregiving experience is often heartbreaking.

It is a poignant witnessing of a dying process in stages and at an agonisingly glacial pace.

There is the initial death of the mind of the person who would slip into what Marcel Proust called "the abyss of unbeing".

Later (usually years later), the person loses control of basic bodily functions and finally death ensues from one cause or the other.

So there is almost never a single victim of dementia. For every person with dementia, there are probably two or three or even more casualties. Studies have shown that caregiving for a person with dementia is a risk factor for burnout, depression and even suicide.

Ms Janhavi Vaingankar and Dr Mythily Subramaniam from the Institute of Mental Health and members of the WiSE Study team published an earlier study last year in the journal, International Psychogeriatrics, which described the multifarious unmet needs of caregivers of people with dementia.

One frequently expressed need was for factual and "jargon-free" information on dementia which they need to make informed decisions on caregiving. Others were for better services, not only for those with dementia, but also for themselves as caregivers. They also need that occasional respite from what would otherwise be an unrelenting and unremitting journey of care.

"In addition to adjusting emotionally to the changes in the behaviour and functioning of their relative, the informal caregivers faced numerous physical demands while managing difficult situations," wrote the authors of the study. "These stressful situations can be further compounded by family conflict, lack of support from other family members and employers, the feeling of guilt for 'not doing enough'."

The caregiver's burden

IN AN elegiac article published in 2009 in the Lancet, Professor Arthur Kleinman, a Harvard University psychiatrist and anthropologist, reflects on his experience as a caregiver to his wife who has Alzheimer's disease.

The whole experience of caregiving, as he discovered, is anything and everything but simple. It devours time, energy and finances; it saps strength, weakens resolve, engenders anger and desperation. It can rip apart families and split them into those who care and those who can't or are unwilling to do so.

"She (his wife) is happy much of the time. It is me, the caregiver, who, more often, is sad and despairing," writes Prof Kleinman.

But he also sees caregiving as a "defining moral practice… of empathetic imagination, responsibility, witnessing and solidarity with those in great need".

Prof Kleinman, who had spent time in China and done research among the Chinese, adds: "If the ancient Chinese perception is right that we are not born fully human, but only become so as we cultivate ourselves and our relations with others - and that we must do so in a threatening world where things often go terribly wrong and where what we are able to control is very limited - then caregiving is one of those relationships and practices of self-cultivation that makes us, even as we experience our limit and failures, more human."

Our population is ageing and the triumphs of medical science have enabled many to live longer, but that also means that there will be more among us who have or will develop dementia.

We need to face this tsunami with a healthcare and social service system that, among other things, would help and support caregivers along that ineluctable descent of an illness that is so often freighted with anxiety and anguish, and enable them and those under their charge to live with some degree of dignity and minimal suffering.

The writer is vice-chairman on the medical board (research) at the Institute of Mental Health.