Baroness Warnock, one of Britain’s leading ethical experts recently talked of the “right to die” of patients with dementia. She called for more research into the illness, in order to establish whether patients with dementia were mentally competent. Thus when they reached a certain point in their illness, they could make a decision of whether they wanted to be “helped to die.”
Dementia groups reacted angrily to this, saying that euthanasia was not the answer to the “dementia crisis.” They called for dementia services to be improved in other ways, without euthanasia entering the debate.
Following the controversy, I took some time to reflect on my experiences of dementia care and patients.
Indeed they are limited; as medical students we can never have a lot of experience of anything. Rather it is bitty, but nevertheless, it can be useful to draw your experiences together to see what you come up with.
My first experience of dementia was during a third year firm. On a “care of the elderly” firm, you get used to the long term patients; the ones that no-one knows what do with. I was ignorant. I shied away from the ones I believed it would be difficult to communicate with. I found it extremely “challenging,” to pluck up the courage to examine a patient with mild cognitive impairment. I had the tendency to believe that all patients with dementia had no memory of their residence, extended family, or childhood events.
When I began a eight month post at a mental health charity, “dementia” arrived once again.
I became a designated “POPP” worker.
POPP- Partnerships for Older People was a three year pilot programme; an attempt to join up the dots between regional older people’s mental health services. As a community development worker, forging links between voluntary and statutory services would be a key part of my work.
I worked with a dementia charity and was confronted with the reality that within my own South Asian community, dementia was not talked about. The charity had little communications with the South Asian community. Either dementia didn’t exist in the South Asian community, or people simply were not accessing services.
In a job such as the above, you can feel like a pawn in a big game; can you actually make a difference?
We investigated dementia within the local communities, and I had to fight all the misconceptions I had formed.
The time I spent at the “Forgetfulness Club” would colour my perceptions. I was looking into an existing service for dementia patients. A group within the Afro-Caribbean community, “Forgetfulness Club,” was a mix of colour, dance and sing-along. Everyone here had been diagnosed with dementia, yet it seemed as though for a few hours every Friday, it was the diagnosis that was forgotten. Even those who were not mobile tapped their feet to music.
The forgetfulness club proved to me that people with dementia can live normal fulfilling lives to a certain extent. There is no doubt that the disease is debilitating, but it seems as though social isolation leads to a more rapid downward spiral. A proportion of the attendees at the club were also attending reminiscence sessions at the local luncheon club. Constantly being engaged, their minds were kept active, and the benefits were there for all to see.
Within the South Asian community, my experience of dementia was different. Dementia is associated with stigma. No word exists for dementia within the South Asian community. Recreating something like the Forgetfulness Club would be a challenge; it would have to be exclusive to the Asian community.
We invited patients with dementia and their carers to a consultation event, where community members could give us the answers to what services we could provide for them. We worried no-one would turn up.
We had a full house.
People were concerned, about their mother in law, their husbands, their cousins. We discussed memory loss, used community languages and produced photographs of childhoods in India, Pakistan, and Bangladesh to stimulate memories. Later we held educational sessions for community members on the signs and symptoms of dementia.
It was the first step for a small South Asian community, nothing groundbreaking, but it gave me an insight into the umbrella term that is “dementia.” The major lessons for myself seem to be not to tar everyone with the same brush. I realise now the varying severity of dementia, and I guess it has influenced my communications with patients. I should no longer be apprehensive about taking that history, or performing that examination.
Aliya Razaaq is a BMJ Clegg Scholar and final year medical student.