Why dementia should be at the top of everyone's agenda (From Bradford Telegraph and Argus)

Why dementia should be at the top of everyone's agenda

12:19pm Friday 16th March 2007

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The Alzheimer's Society recently revealed that caring for dementia patients costs Britain £17 billion a year - yet the National Institute for Clinical Excellence (NICE) is denying drugs costing just £2.50 which could slash that bill.

A major study published by the society, highlighting the social and economic impact of dementia in the UK, is a stark reminder that it's an issue we can't afford to ignore. There are more than 700,000 people with dementia in the UK and over the next couple of decades that number is likely to have risen to more than 1.7 million.

It has been proven that drugs such as Aricept can delay and even reverse the onset of dementia in its early stages, but NICE won't prescribe them on the NHS when they're most needed.

So sufferers and their families who could be given some sort of temporary reprise at an early stage of this cruel disease are left struggling as it takes hold and progresses at lightning speed, leaving patients and their care costing the country £17 billion a year.

The bitter irony is that, while denied a drug costing a measly £2.50 per person per day, the family carers of people with dementia save the UK more than £6 billion a year.

My family is one of them. My mum developed signs of dementia in her mid-Fifties and, 10 years on, she's unable to walk, feed, wash or dress herself. She can't see and she struggles to make sense in her speech. She spends most days sitting in a chair because it has reached the stage when we can barely move her.

Before dementia took hold, she lived life to the full. I know it's a cliché, but she did. A former teacher in several Bradford schools, she was an active member of amateur dramatic societies; she wrote and directed children's shows; she ran a Brownie pack; she was in the church choir; she played the piano; she painted, she did pottery classes, and she was a founding member of her local WI. There was hardly a night of the week when she wasn't out doing something. She couldn't even watch TV without a pile of sewing on her lap, or something arts-and-craftsy laid out in front of her. Far from being a frail old lady, she was full of life when she started losing her mind at the age of 56.

Caring for a relative with Alzheimer's is heartbreaking on many levels, mostly it's a bereavement that you can't get over. You grieve for the person they once were, but you can't move on. While they've gone in spirit they're still around in body and you're faced with the increasingly difficult burden - and yes, I'm afraid it's a burden - of caring for them.

It breaks my heart that I'll never hear my mum's voice on the 'phone again, that I'll never go shopping with her again, that we can no longer chat about the things we used to chat about. It breaks my heart that she's been robbed of her retirement years, when she would have been filling her days with all kinds of things. It breaks my heart that she doesn't really know her grandchildren, and that the vibrant, sunny girl my dad married 40 years ago is now a shell of her former self. And it breaks my heart that the memory of what she was like, pre-dementia, is starting to fade.

There was no talk of drugs like Aricept when my mum started with dementia. It took six years of doctors prodding and poking her to finally diagnose her and by that stage it was too late.

But if she'd been allowed a drug like that in the early stages it would have made a huge difference for her and for us.

Alzheimer's isn't a particularly trendy disease - you won't find hip young comedians, actors and rock stars doing self-indulgent telethons to raise funds for it - but it's something that will affect increasing numbers of us as our ageing population increases.

As well as the likelihood that you might end up with it one day - even in your mid-Fifties like my mum - there's also the strong possibility that you'll become a carer for at least one of your parents, or another family member.

And, believe me, being a carer is a long, soul-destroying, often lonely struggle. Despite my mum suffering a particularly cruel form of dementia that has attacked her body as well as her brain, leaving her blind and in a wheelchair, we have only just secured a home care package for her and it took a good three years to get a disabled badge for the car. Don't get me started on daycare - that has proved practically worthless.

It was with a pinch of salt that I took the comments of Peter Kay, Bradford's director of social services, who told the recent launch of Bradford & District Senior Power about the Government's vision for social care for the over-50s being "designed around the person."

The Alzheimer's Society is calling for dementia to be made a national health and social care priority; a substantial increase in publicly-funded dementia research; improvement in dementia care and more community-based and carer support.

If you think this is just something that affects forgetful little old ladies, you've got your head in the sand.