Down’s Syndrome and Alzheimer’s Dementia

screen clip of research paperIt’s a dreadful double whammy – people with Down’s are much more at risk of developing Alzheimer’s due to the extra strand of chromosome that causes Down’s in the first place.  Better healthcare and support means many more people are living into older age (in the early 1900s, most didn’t survive beyond 12 years), enjoying more life opportunities than ever before – including acting, gigging, (check out Heavy Load – I knew several of them!) and hitting the clubs and festivals  supported by friends, family, and the likes of Gig Buddies and the Stay Up Late campaign.

But the tragedy of dementia lurks and threatens to peel away the thin layer of icing on their newly risen cake.  What a prospect: a newly realised good quality life expectancy with the almost 100% risk of it all ending in such a dreadful mire of memory and personality loss.

So where is the upside? It’s here: with a population so at risk and a clearly identifiable strand of genetic material to look at, there’s the possibility of finely tuned research into the disease and this will benefit all of us.

ALL. OF. US.

Say thank you – to the researchers, to the participants, to the families and support workers.

ALL. OF. US.

Spare some cash for their funds.

ALL. OF. US.

And next time you hear some ignoramus insulting a person with Down’s, call them out. Sometimes being better than that ourselves and feeling uncomfortable about it isn’t quite enough to challenge those insults (you know the ones well enough), but maybe this will give us all a shove in the right direction.

Because did I say ALL. OF. US?

Advertisements

‘Time for Dementia’, a Sussex Partnership medical training inititiative

The older we get as a population, the more dementia is likely to affect us closely, either as the person who has it or as their carer, family, or friends. Health services have not always been geared to these long term, shifting, deteriorating, and often demoralising needs in which an individual loses the core of themselves and those around them, incrementally day by day, lose the person they love. Training is a key issue but exposure to the trajectory of dementia has usually been missing, leaving just the bare bones of clinic snapshots supplemented by text book descriptions and checklist facts.

This short video describes a new project involving two major mental health trusts*, a number of local universities** and the Alzheimer’s Society***. Uniquely, it enables medical, nursing, and paramedic students to spend time with people who have dementia in their homes; getting to hear directly from them and their families or carers, and observing the change over time that both the person and those close to them are trying to manage. The experience of putting people in context and having conversations instead of relying just on those clinical checklist snapshots seems a positive way forward in enabling professionals to ‘see the person, not the diagnosis’. As one carer says, commenting on how interested their visitor students were, ‘I hope they’re going to look after us when we really need it.’

 

*Sussex Partnership NHS Foundation Trust and Surrey and Borders NHS Foundation Trust

**University of Surrey , University of  Brighton, University of Sussex, Brighton and Sussex Medical School

***Alzheimer’s Society