On the BBC Headroom site, there is a section all about alzheimer’s disease. It is from here you can watch again Terry Pratchett’s documentary ‘Living With Alzheimer’s’- but there are also a number of other short videas made by different people, ordinary people, about alzheimer’s in their lives. It’s really interesting that many of the people being interviewed actually have the disease (is diagnosis getting better/earlier?) as most of my work is with people in the later stages, and therefore they do not communicate a great deal, let alone about themselves or their condition.
There is a disturbing message from many of those with dementia that somehow they will become less themselves, lose their humanity, or as one woman put it become ‘just a shell’.
I don’t know how I feel about this. I see the pain caused watching a loved-one increasingly struggle with daily tasks, and experience non-recognition, or unpleasant, or even violent behaviour from that loved-one. However, Alzheimer’s should not result in the slipping away of someone’s humanity. Just as disability campaigners argued against a medical model of disability, it is absolutely crucial that communities ensure an individual’s sense of personhood. Speaking to a carer at a residential dementia home, she expressed how she felt she knew a resident, even when they were very late stage dementia. There is more to our personalities than what we think, do or say. It’s our humanity talking.