Arifa Akbar: Dementia is unbearable – and the system makes it worse


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The Independent Online

A deluge of responses trailed this newspaper's dementia campaign last week. Nearly all the stories you shared were heartbreaking and horrifying in equal measure. Most began with the words "I simply had to write…" or "my mother/father had a similar experience" and many described a loved one's last days, months, years, in a system that sucked the dignity out of them. There were stories of over-medication, slow diagnosis, inadequate nursing care and astronomical financial burden.

Worst of all, there were accounts of sufferers being shipped to homes miles away from their families to die alone.

What did we learn from sharing our stories? That dementia is a serious illness that deserves to be seen on an epidemic scale, but also that the system can make this "long goodbye" as it is known into an unbearably painful one by its lack of money and expertise.

David Blunkett highlighted, in his piece about leaving his brain to science, that a cure is the grand hope. But as Fiona Phillips pointed out, while this eludes us, care is what counts – and government needs to give it the priority funding it deserves. One reader summed it up in a nutshell: "I am happy this problem is receiving attention. It needs to receive money."

I know from a decade's experience of my father's dementia that the doctors, nurses, carers don't mean to get it wrong, but to those who suffer, and those who watch, it may as well be wilful.

The elderly themselves are the post-war generation who were taught never to complain. Relatives often follow suit – they are grateful, they don't want to be complainers, they see the system is over-stretched, and perhaps importantly of all, they don't want to show their anger for fear it may be taken out on their loved ones. This adds to the thundering silence around the suffering.

I didn't write about my father's illness for years because I sensed that he didn't want me to make a fuss. However awful his care, he would nod and say it was "fine", seeing himself, I think, as an inconvenience and wishing for death as a way to escape. Now, I realise there are so many, far more tragic stories untold.

My grandfather, before my father, suffered from Alzheimer's for decades. A revolving circuit of extended family members would look after him in his home in Lahore. He died in his 90s, but it wasn't his illness that killed him. He suddenly stopped eating when his wife of 75 years suffered a fatal stroke. It was as if he decided that he didn't want to live without her. He died nine days later. I wonder if he would have lived as long with Alzheimer's if he had been in Britain. I'm not suggesting that Pakistan has a better system of dementia care, but here, the elderly ill are made to feel a burden. My grandfather never was.

What is most frightening is that dementia is a future that awaits "us", the young and sound of mind.

Simon Kelner is away