Can we live well with dementia?
Roy Lilley wrote a great piece today for NHS managers.net.
The care of people with dementia is indeed awful.
The support for and care of families and carers of people with dementia is awful.
Having dementia in the later stages is awful.
Supporting and looking after someone with later stage dementia is very very hard work, probably awful too.
So when we “glitterati and middle classes” write and talk about ‘living well with dementia’ what the hell are we talking about?
Roy is right to question this. Dementia is shit.
But, to draw on Truthful Loving Kindness and others, the shit comes from how we are treated, not so much from the dementia itself.
Dementia is a disease. But people don’t know how to react or support or behave.
If I’ve got cancer I get pretty holistic care and support, often from a Macmillan trained nurse. And so does my carer. The NHS has become good at this. The big C is now cancer. We talk about it. We live with it. More live than die.
With dementia what do I get?
In Shropshire (and many other places) we don’t have Admiral Nurses. If we did, there might be two or three across the county so there would be some support from specialists who “know” dementia.
We get a pack of leaflets and booklets.
We get an annual meeting with a specialist community nurse.
If we are admitted to hospital the staff may have had their 45 minute training, or may not have.
They don’t have time, as Roy says, to attend to the person who gets out of bed five times a night, who wanders, who doesn’t follow instructions and, oh surprise, has a fall. Or who is just lost in a foreign and strange land, and frightened by it.
So what about is “living well with dementia”?
I’ll tell you.
It’s about what we aspire to. How we want things to be.
It’s about ‘coming out’ and talking about having dementia, living with dementia.
It’s about campaigning for better care, specialist nurses/care navigators, proper training for all.
It’s about getting the best possible life in your community, not the stuck at home imprisonment that many now suffer.
It’s about getting proper support and respite for carers who have given up their own identity and lives.
It’s about developing a language that people will use to talk to us, without constantly saying things that belittle us.
It’ll still be shit to have the disease. Can’t change that.
But it’ll be possible to live well with dementia.