Producer Jo Rogers about Jamie's Film
JAMIE GRAHAM wanted to do something. He wanted to raise the profile of Alzheimer's disease, to fund urgently needed research and to keep his own spirits up. So he decided he would attempt to row 25 miles with his friends and family from Henley on Thames to Eton, where he would finish his challenge by heading up the annual Procession of Boats at the famous school where he was once a pupil.
For Jamie this would be a brave and difficult challenge, for while he could remember the deeply entrenched act of rowing, he could no longer remember how to get in and out of a boat. FORGET ME NOT tells the story of Jamie’s big day out on the river, weaving an intimate picture of life with Alzheimer’s, set against this beautiful Oxfordshire backdrop. It is his own story, in his own often faltering but candid and courageous words.
JAMIE GRAHAM was diagnosed with Alzheimer’s when he was just 59. In the 20 or so seconds since you began reading this, there will have been another three diagnoses of dementia in the UK, of which Alzheimer’s accounts for over 50% of cases. That’s a new diagnosis every seven seconds.
Chances are that you are one of the lucky ones who have had no direct experience of dementia, and are wondering why statistics like this should matter to you. You might think dementia is merely a memory condition, a benign and expected by-product of ageing, which happens to the elderly. That would be understandable, if it weren’t so very wrong.
The simple answer to that is that dementia is in fact brain disease, for which as yet there is no cure, and 1 in 3 of us will die with a form of it, whether it’s Alzheimer’s, Vascular Dementia, or a rarer form. It is debilitating, degenerative and terminal, with profound and devastating effects on those who live with it, and on their families. So it may not matter now. But it most probably will matter to you in the future.
The chances are equally that you already know this, and you are one of the hundreds of thousands of people in the UK for whom dementia is all too much of a reality. You might be one of innumerable people working in related fields of research, fund-raising, care or medicine. You might be one of 600,000 fulltime unpaid carers. Or you might be one of the 850,000 people in the UK who have to date been diagnosed with dementia like Jamie, and you might be coming to terms with living life in a very new way. 850,000 people. That’s a population four times that of Newcastle.
By 2050 it will be four times that number, because of an ageing population and paradoxically better health care. That’s nearly 4 million people with an incurable, neuro-degenerative disease which would eventually kill them. 4 million people who will ultimately require full-time care. That’s the population of most of cities in the UK added together.
What we face is nothing short of what experts and the government are beginning to realise now is becoming an epidemic, a “national crisis” as David Cameron has called it. Unless we act now to raise funds and awareness, to find methods of prevention and cure, it is safe to say dementia may be the bleak future for many of us.
On receiving the diagnosis, Jamie and his family entered a whole new landscape. Besides the medical discoveries they would make about the amyloid deposits in Jamie’s brain, and the associated and impending loss of functioning which is particularly aggressive in early onset cases, they would learn only too quickly that there are few specialist care and support facilities, that there is limited disability allowance for dementia patients and none for their carers, and that there is a mere fraction – a twelfth – of the funding available to care and research that there is for cancer, AIDS, stroke and heart disease. What they also discovered was apathy.
Unlike other diseases, Alzheimer’s had long been shoved in the category of ‘elderly issues’; dubbed “senility” for many damaging years, it had simply fallen off society’s radar as had the many thousands of people with the disease. But as Jamie and his wife Vicki knew, the gradual and terrifying loss of words, memory, orientation, and cognitive function that Jamie was experiencing are far from “elderly issues” for this comparatively young, fit, healthy and sociable man.
This disease was robbing Jamie of his independence and his very place in society: he found that when you stop being able to communicate, people stop listening as much. Society, it seems, is in collective denial about dementia and not remotely attuned to the needs of its many thousands of people who live with it. Jamie was comparatively lucky. He had friends and family to look after him. But for so many dementia patients, life is lonely, bleak and frightening.
When our loved ones no longer remember us, or perhaps we become the target of their aggression, another possible effect of dementia, the solution is all too often a home with non-specialist care facilities; a terrifying prospect for anyone who suffers memory and language loss and is unable to communicate their fear or their needs.
And for anyone who lives with dementia, or who cares for someone with it, the question burns: what are we going to do about it? Before it does something about us. As the big pharmaceuticals companies announce their retreat from the race for a cure for Alzheimer’s, Jamie’s story is just one of many thousands we must now listen to.
FORGET ME NOT premiered on Community Channel on 8 November 2012, to coincide with David Cameron's Dementia Reception at 10 Downing Street. Jo Rogers' production for Ascendent Films , has been broadcast more than 30 times. A link to the video is given above.