I'm devastated by this thread, and the article it comes from. Does it mean that all the activities I've been involved with to help make life better for PWD and their carers are a waste of time? Does it mean that some people with the disease are so badly affected that we might as well not bother to give them some pleasure, through Singing for the Brain, art or other events? Does it mean that helping and encouraging the general public who have no direct knowledge of dementia to be considerate, patient and helpful to PWD is pointless because they don't see how terrible things can be?
I'm not blind to the effects on families of these diseases, but I also had felt, up to now, that my efforts had some point. Now I'm not so sure.
All the efforts to improve the quality of life for pwds have a point and I really appreciate those efforts because I have seen the effects. But it's not a straight line.
My late father was in an EMI home because he needed that level of care. His quality of life was abysmal, he fought, he ranted and cursed it was like a nonstop torture for him. But the home never stopped trying right up to the end when he was bedridden and they built a bird table outside his bedroom window. I loved them for that.
But the point of the article is a good and strong point. The public model of dementia is like Dementia-Lite and it too conveniently enables a political evasion of the worst kind. And that evasion has a massive impact on the lives of everyone involved.
Dementia strips away personhood and is devastating and how we deal with it is, I believe, the measure of what kind of society we are. And we don't deal with it well if we avoid confronting the harsh reality that many people with dementia suffer in the most horrific ways.
Look at how 'care in the community' facilitated the dreadful cuts to mental health care and we're heading the same way with both dementia care and now in the UK with physical health care too. Read the wording of the latest Sustainability and Transformation Plans and how they transpose health care to home care.... Who exactly is going to provide this 'care' and how?
We have a rising political manoeuvre that's trying to pit generations against each other, slowly drip feeding the ideas into the news media of 'intergenerational fairness' for political ends.
We have a potentially catastrophic undermining of the idea that health care is a fundamental right, free at the point of delivery. We're sliding inexorably towards massive change and in terms of dementia care it's not looking good.
If we don't hold those in power to account not only will there be no improvement but the situation for people with dementia and their carers will decay. The article is right. How can we alleviate suffering if we don't acknowledge its presence?
We must never stop bothering no matter what......