"By the end of this one-hour session at Hay, 20 people in the UK will develop dementia," said Jeremy Hughes, Chief Executive of the Alzheimer's Society. A depressing statistic to start the session, but the ensuing contributions were far from down-beat.
'The biggest health challenge of the 20th century' was foreseen by Tom Kitwood, whose 1997 book Dementia Reconsidered has just been updated, including words by Keith Oliver who has dementia and, as ambassador for the Alzheimer's Society, has addressed the UN, and spoke eloquently at Hay tonight. Described as "an expert by experience", he was diagnosed at age 54 in 2010, and said, "I experience dementia 24/7 to various degrees. A fog lifts, then descends, and sometimes it is impenetrable."
It is only in the past decade that early diagnosis has featured, giving patients time to adjust to their future.
Hughes outlined four main areas of concern:
- Language. We are more careful about the words we use. However, in some languages there isn't even a word for the disease.
- Awareness. This has definitely increased.
- Research. Not such good news. There has been no new drug treatment for the symptoms in 15 years. The government puts a pitiful amount into new research.
- Care. More people are receiving the correct diagnosis, but still one third of the 850,000 people in the UK who have it, don't know they have it.
Dementia is no longer a taboo subject, and the Dementia Friends scheme is growing rapidly, with 500 people a day signing up to help.
Professor Tracey Williamson of Dementia Carers Count at University of Worcester, and a former nurse, focused on the other people affected by dementia – the partners, siblings and unpaid carers (60-70% of whom are women). It also affects all their lives, work and hobbies.
Professor Dawn Brooker, Director of the Association for Dementia Studies at University of Worcester, quoted Tom Kitwood who said, "When you've met a person with dementia, you've met a person with dementia". Everyone copes with it differently and behaves differently. There is still stigma and prejudice, and we must recognise the human value of the person and the families.
Left to right: Richard Cheston, Tracey Williamson, Dawn Brooker, Jeremy Hughes, Keith Oliver
Picture by Paul Musso
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