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Dementia is characterized with a range of symptoms: the disorder of the long-term and short-term memory; the disorder of the abstract thinking; the disability to criticize and plan something, so that to make logical plans; the alteration of the personality (when the person starts to forget everything and fails to recognize her relatives, she becomes a different person with her own inner world); social exclusion (in the family and at the workplace); etc.
John Hodges, M.D., Professor of Cognitive Neurology at the University of New South Wales, Australia. Dr. Hodges has been a longtime researcher of cognition in the context of neurodegenerative disorders. He has authored more than 450 journal articles and five books relating to cognition and dementia. His current research focuses on frontotemporal dementia.
I am honoured that I have been often quoted in his own academic papers. I am indeed quoted in the Foreword to the hugely popular ‘‘. He in fact quotes my Brain paper in the chapter on dementia in the current . Both books are published by the Oxford University Press.
I unreservedly have written this book for people living with dementia and their closest, but I feel the people who might also benefit from reading this book include doctors, nurses, AHPs, commissioners, academic researchers, social care practitioners, the media, the voluntary sector, and other interested members of the general public.
But there are 47 million people in the world who are relying on news of developments in Alzheimer’s disease and the 100 or so other types of dementia. Some of the Alzheimer’s disease research community have now successfully dug themselves into a hole.
It’s well known that the relationship between the media and reporting of dementia has been in the past a tricky one. Take, for example, this from the Association of Medical Research Charities, Cancer Research UK and the Wellcome Trust to the ‘Leveson inquiry: Culture, practice and ethics of the press’, dated January 2012.
In fact, you are entitled to think I am pretty useless. But I am not in fact. I care passionately about dementia research, having done my own work in discovering an innovative way to diagnose the behavioural variant of frontotemporal dementia at Cambridge between 1997-2000. In fact, a key supervisor of my Ph.D. was Prof John Hodges who won a lifetime achievement award at this year’s Alzheimer’s Association conference held in Washington. I consider Hodges a friend as well as colleague. I have been open with him about my personal and professional background. Indeed, John, still knowing all the facts, did me the honour of writing the main Foreword to , “Living well with dementia: the importance of the person and the environment.”
I asked somebody who has quite a strong family history of dementia, and a Daily Express reader, what she thought of a possible research development in a cure. She answered straight away, “I think it’s brilliant. Who wouldn’t want a cure for dementia?”
I published my paper in 1999 with Prof John Hodges and various others for a reason. This was because they were patients turning up in cognitive neurology clinic, query the behavioural variant of frontemporal dementia, whose tests appeared at first blush entirely normal. And yet these tended to be people in their 50s or 60s with quite profound changes in personality which had been noticed by their closest. I provided an explanation for why this paradox exists in this which is now cited in the current Oxford Textbook of Medicine. I argued it’s because the part of the brain which is affected, a part of the brain near the front of the head towards the eye, is hard to investigate.
But having thought about it a lot recently, in light of national policy, I’ve concluded that I like research into dementia a lot. I enjoy reading about it all the successes and failures. I like doing my work, even though it does not consume any expensive resources. I’ve so far got a chance to present my findings, which have not cost anything at all, at two international conferences: Alzheimer’s Europe and Alzheimer’s Disease International.
Chris here explains his own experience of dementia, and explains the need for research in his BBC World interview. Any person with dementia becomes an expert in his or her own condition in time and place.
‘ (@beatdementia) is an initiative anyone can join in to take part in dementia research. It’s sort of like a different sort of dating agency – one where you paired up to the research project most suitable to you. You don’t have to be living with dementia to participate.