Tuesday, April 23, 2013

From heartening to heartbreak

On Friday and Saturday I was at the Alzheimer's Show. 'How can you have a show about Alzheimer's? It's not an entertainment!'.  But what else do you call it? An exhibition? An exposition? Max Pemberton of the Daily Telegraph said 'An Alzheimer's show does make sense.' (His article is available on line here.) Show is just about the only word to describe the collection of talks and stands full of information around Alzheimer's and dementia. And calling it anything else could have been disingenuous.

The first show like this ever run in the UK (and anywhere else? I don't know) we didn't know what to expect. Who would attend? What did the people who visited the show expect too? But it went ahead, despite some challenges in the early planning. And, in my opinion, it was a success. Others' too, I hope.

What I can give you is my experience of the event, which was both heartening and heartbreaking at the same time.

Alzheimer's, the most common form of dementia, is a disease. Diseases can be beaten - but we are a long way off from a cure, partly because we know so little about the complex human brain. So research is happening (not enough) and progress is being made, but we are years behind other diseases like cancer and heart disease.  I was there to help provide information on what research is being done and what real progress is being made, but there were also stands with practical help - everything from phone call screening machines, through legal advice to the admirable Admiral Nurses.

I was on a stand and talking to the visitors - a myriad mix of people, including occupational therapists, trainee nurses, and people with the disease. Though every conversation had was in its own way powerful - and we had very many indeed - there were a few that stood out.

The first was a nice looking man of about 40. He approached the stand and asked for information about Alzheimer's. I asked what his area of interest was. 'I am a policeman,' he said 'and we often get called out to help find people who have got lost, or we pick up wanderers. And sometimes we visit families who are just at breaking point. I want to find out more to help us manage these people properly.' Right then and there I found my hero for the year.

I met one family, husband about 45, son perhaps the same age as mine (early 20s). The wife told me that the husband had just been diagnosed with early-onset Alzheimer's. The future ahead for them is not going to be easy, but maybe we'll find a cure for his grandchildren.

I met many people who had recently been diagnosed, and I met their carers, families and friends. Every single story, every exchange we had, there was a heartbreak. One way or another, nearly a third of the UK population has a close friend or family member with dementia (more stats here in this simple animation). The impact of the disease is huge - not just on those with the disease, but on everyone around us.

Another conversation that really stood out was with a young lady from South Africa. She is a dementia carer here in the UK, but her main ambition is to go back to South Africa, to the townships where she came from, and educate people about dementia being a disease. What she told me was shocking - that people with dementia who wander into dangerous areas, or even just into other people's homes and gardens (such as they may be) are considered to be possessed - to be affected by witchcraft. It was almost unbelievable to think that in this day and age people do not understand about Alzheimer's and attribute it to witchcraft, but there is evidence that this is so. When she told me that many of these people are killed through fear and misunderstanding, I realised just how serious this young woman was.

I'm not sure what difference we can make to perceptions world-wide, but every little bit of progress in education and in moving closer to the treatments and cures for dementia that research is unearthing, has to be a good thing. An Alzheimer's Show was, in my humble opinion, a good idea.

Useful links:

Admiral Nurses
Alzheimer's Research UK
Alzhiemer's Show - 16 and 17 May 2014
Alzheimer's Society
Dementia information
Dementia statistics
Dementia UK
NHS About Dementia

Photo credit: Policeman from Strawberry Fair by George
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