Sunday, 10 October 2010

Time to start taking dementia seriously

The growing problem of dementia in society was once again highlighted by a report from Kings College London that found 35 million sufferers worldwide costing £380 billion in social care
This amounts to 1 per cent of GDP worldwide or equivalent to the 18th largest country in the world.
The report commissioned by Alzheimers Disease International predicted that the number of sufferers would grow to 66 million in the next 20 years and up to 115 million by 2050.
In Britain there are 820,000 people who have dementia, around half of these suffer with Alzheimers. This figure is expected to double by 2050.
The dementia business seems dominated by statistics, what though must never be lost sight of is the terrible suffering it causes.
Our family had to deal with dementia when my Dad became a sufferer.
He steadily grew worse over the years. It must be frightening to deal with as the disease takes over your life. Reading Dad’s diaries after he died, it was apparent how his thought processes were breaking down as detailed chronicling of each day declined to where it was one or two points and then nothing. One particularly sad entry, showed a desperate loneliness as he revealed it was getting difficult to remember things he’d done that morning.
It is the process of seeing your loved one transform into someone who cannot remember your name that can be so debilitating for all concerned.
Dementia and the care needed with the illness is something that is fortunately beginning to gain more attention. In our case, there was little help for many years.
When the bean counters are throwing the numbers around, there should be a little more focus on some of the damage being done to those unpaid carers, on whom the burden often falls.
In our case that was mainly my mother, who for 18 months, prior to Dad going into a home was the main carer. She was 80 years old at the time, in need of care herself if anything, not dealing 24 hours a day with a husband in the advanced stages of dementia.
Dad was always a strong willed person, in control. This was a positive thing for most of his life but once dementia hit, this type of drive became negative. He would try to climb out of windows in the middle of the night. If he got out he would wander round the town.
That 18 months of caring for my Dad took its toll on Mum. The stress no doubt contributed to her loss of eyesight, hearing and other ailments.
And it is people like my Mum who end up bearing the burden of the dementia time bomb. Government does not want to pay for the condition. There is a period with dementia where you are virtually left in limbo. For us it was during that period when my mother was in the main caring for Dad.
While you don’t want the health service taking on big brother powers to take away loved ones, sometimes people need help. The system is too willing to let individuals go through their own private hell as they struggle to provide the care required.
Dad finally went into a home in October 2005, the first of three before he died in August 2008.
Homes though are another world that the dementia sufferer and carers have to endure. The whole sector has pretty much been farmed out to the private sector. There is a lack of regulation in an area that patently needs regulating. Dementia sufferers are in many cases as vulnerable as babies. The scope for abuse is immense, as was evidenced last year by a government report that found homes over using drugs to sedate dementia patients. Otherwise known as “the chemical cosh.” Government has moved to provide specialist training and more regulation but the danger of abuse remains constant.
The worry is that those who own the homes see them in the main as profit centres. The staff are often on low wages, for a job that if being done properly requires a high level of expertise.
A good home will seek to stimulate the dementia sufferers. They will be kept in a safe and caring environment. The worst homes are really warehouses of dementia sufferers waiting for death.
Dementia has gained a greater profile over recent years. This is no doubt due to a number of factors, first the growing number of sufferers and subsequent impact on those involved in caring and other duties.
Around 25 million people, or 42 per cent of the population, are affected by dementia through knowing a close friend or family member with the condition.
Second, in our celebrity dominated world, the instances of the famous like Cliff Richard, Fiona Philipps and John Suchet having relatives effected has led to greater publicity.
So there has been improvement in terms of the growing public awareness of the condition. There is still though much that needs to be done. The level of funding for research to find an answer to the disease is lamentably low compared to other conditions like cancer and heart disease. While cancer attracts £600 million a year in research funding, dementia gets just £50 million.
The attitude among medical practitioners to dementia needs to change. A doctor on a documentary presented by Fiona Philipps commented that you would not send a cancer patient away and say come back when the conditions worsens, which is what happens with many dementia cases.
There have been breakthroughs like the rember drug but there is the question of the cost and availability.There also needs to be a real focus on care. It should not be left to the relatives of the dementia sufferer to pick up the care duties unaided. There should be more help in the home and proper regulation of care homes. All of these matters need to be addressed in order that our society can deal more humanely with the victims of dementia

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