CampaignsHealthcare RationingAlzheimer's treatmentAlzheimers: the message for all of us from Terry Pratchett's experience Alzheimers: the message for all of us from Terry Pratchett's experience
By Judith Cork - 14/03/2008
Best selling author Terry Pratchett has put the plight of hundreds of thousands of Alzheimer's sufferers in the spotlight. Here one reader, who cared for her mother when she had the disease, asks why it is such a poor relation when it comes to support.
The Saturday before Mother’s Day I joined a handful of women to pack bags at Marks and Spencer. As one customer said “you’re not from one of those charities are you?” I turned and displayed my badge proudly, “the Alzheimer’s Society”.
The other ladies, like me, had all direct experience of this distressing disease. The husband of one had recently been diagnosed. She was given a comforting and spontaneous squeeze, the hug more meaningful than any words and a sad taste of the future where touch will replace talk. Our fund raising efforts were local and low profile - not in Terry Pratchett’s league but still with the same purpose to help and support sufferers.
Alzheimer's disease is the most common form of dementia in the UK. It was first described by the German neurologist Alois Alzheimer and is a physical disease affecting the brain. It is progressive, which means that gradually, over time, more parts of the brain are damaged. As this happens, the symptoms become more severe. Age is the greatest risk factor for dementia. Dementia affects one in 14 people over the age of 65 and one in six over the age of 80. However, Alzheimer's is not restricted to elderly people: there are 18,000 people under the age of 65 with dementia in the UK, although this figure is likely to be an underestimate. Terry Pratchett, at 59, is one of these “younger people” with dementia (i.e. anyone under 65).
His media exposure has helped to put the spotlight briefly on the plight of many thousands of people and their families facing a disease that is kept closeted away and hidden by ignorance. He joins the ranks of other high profile sufferers such as Ronald Reagan, whose brain capacity was the brunt of much of “Spitting Image” satire. We passively joke about these issues as we have “senior moments” so that mental deterioration becomes an accepted part of our ageing culture. My own preference is for having a CRAFT moment (standing for “can’t remember a f***ing thing”) because at least this phrase is active, amusing and slightly defiant.
The Radio 4 programme “the Archers” has a sensitive and insightful storyline about the famous Ambridge entrepreneur, Jack Woolly, and the ongoing decline of his mental faculties. The impact on his stoic, but irritating, wife Peggy and family makes gripping listening. But the Woollys are wealthy and have educated family and friends to buy and demand the best care, and they’re not real which helps, as does the flesh-and-blood Pratchett.
But for many thousands of others, whose plight we don’t hear broadcast, they are relying on the support from their primary care trust, local Social Services and voluntary sector, trying to come to terms with the hurdles of care assessments and “substantial” and “critical” care definitions which determine how much will be paid.
The Government has presented its vision for social care reform, promising a Green Paper in 2008 following widespread public consultation and pledging an extra £520 million over the next three years to help modernise service delivery. Mr Pratchett’s comments clearly highlighted that there is competition for resources, and diseases like Alzheimer’s are the poor relation to cancer, for example, when it comes to handouts.
This has to be largely attributable to the continuing stigma of mental illness and our overall ageist attitudes. However, whatever disease you are being faced with, and whichever one you decide it’s “best” to die from (a suitable pub discussion for the depressed) the current caring and funding gaps are now being filled, and have been for a long time, by devoted family, friends and fund raisers. Carers’ contribution to society is estimated to be a whopping £87 billion a year with 3 out of 5 of us likely to be a carer at some point in our lives. So the positive stories evolving from these major life events will be about the carers who bravely battle on with energy and commitment, driven by the need to alleviate the pain and suffering of their loved ones.
The entry for Terry in Wikipedia states he is the UK’s best selling author of the 1990s. He is described as having a cult following. During the next decade, a new cult of people with some experience of the disease will surely evolve, following his story which will inevitably unfold into a bleak, predictable and, for some of us, familiar genre called “the forgetting”. His comic fantasies will turn into the human and humourless tragedy that this disease represents. It is through his public profile and personal forgetting that we might have a chance to continue to remember the forgotten, the disease sufferers and their carers, and to do something positive to raise the profile with statutory funding quickly replacing bag packing in big stores,
The author runs her own consultancy, Judith Cork Consulting, focusing on the issues and opportunities arising from the ageing population. See judith@judithcork.co.uk or the website below or call 01484 434 969.