It Ain’t Necessarily So – 8: Is it right to segregate people who have dementia?
Caring Times, September 2013
With JOHN BURTON
In Dementia Reconsidered – the person comes first (1997), the late Tom Kitwood describes a brief episode on a specialist “Alzheimer unit” of a care worker sitting a woman in a “bean bag chair”. In a few seconds of interaction, he observes “elements of disempowerment, intimidation, invalidation, banishment, objectification, imposition and withholding.”
Yes, the care worker, or, more accurately, this “unit” displayed all the signs of a “malignant social psychology”. With enhanced fees on offer, many – if not most – providers claim they have specialist care and accommodation for people with dementia.
Some of these homes are brilliant but I would argue that the better they are, the less overtly specialist and the more normal and homely they seem. They may be specialist homes but their speciality is in real relationships taking place in an authentic community or family setting.
These are places where there is an overwhelming feeling of togetherness rather than separation. Go to other specialist dementia units and you will find a very different picture: disheveled people pacing up and down the corridors; cries for help; staff talking with each other but not with the residents; no friendships; silent mealtimes; hoists, notices, colour coding, medication, “toileting”, locked doors, uniforms and clock-watching . . . segregated staff and segregated residents.
Thoroughly institutional and unhappy, utterly malignant. Yet, like Winterbourne View, such a place may command high fees because it claims to be a “specialist unit”. Imagine the despair of being dumped there because you need “professional dementia care”.
As with so many of our problems in social care, the idea that people who have some form of dementia should be cared for separately from those who don’t has a superficial appeal to policy makers, professionals and providers. It is based on several flawed assumptions: that there is a clear definition of dementia by which people can be categorised and grouped together; that caring for someone with dementia is essentially different from caring for someone who doesn’t have dementia; and that there is some dividing line in the progress of the illness between “having it” and not.
Surely, someone who is seriously losing their memory, for example, is better off being with people who still have some of the memory that they have lost. Someone who enjoys their food and conversation, but is forgetting to eat and lacks company, will soon be looking forward to mealtimes when she eats with others who enjoy the all round nutritional, sensory, and social satisfaction of the occasion.
But, put her in a “specialist” unit with people who have lost the habits of a lifetime, where the table is bare and the conversation non-existent, and she too will lose all hope and descend into passivity. Staff will defend the need for their specialism by showing you the desperate situation that they have brought about.
People have enough problems with dementia without having them tragically multiplied by such specialist care. It’s estimated that up to 75% of residents of care homes have some degree and form of dementia, but dementia is a catch-all word for a wide variety of cognitive impairments. It would also be true to say that the vast majority are physically frail and suffer from several disabling conditions and illnesses, but when you spend time in a really good care home, you see residents looking after and concerned about each other, with one person’s disability being complemented by another’s ability.
We found a different way: Caring Times readers tell their stories
Care home manager, South East: Three years ago I took a job as dementia care unit manager at a large, new care home run by a medium-sized provider. It all sounded good – the pay and the company policies. When I looked round I could see that a lot needed changing and I said so at my interview.
We had 25 residents on two wings of the top floor. The staff had all been through dementia awareness courses but that didn’t seem to make any difference. The “care” was very routine and institutional, and the staff treated everyone the same although they were all very different. It was like a prison but worse because the residents were being punished for having dementia.
I tried and tried to change things but when it came to the crunch – like getting rid of staff. or altering the hours to suit the residents – I never got backing from the manager or the company. All they were interested in was keeping the unit fully occupied. Most of the residents would have been better off mixing with other people. They got worse when they came to live on the unit and that was used against them to justify putting them on the unit in the first place. The local authority and CQC couldn’t see what was going on behind the scenes, even when I drew their attention to it. The company got wind of the fact that I had been “disloyal” and I was asked to find another job and paid off. Now I’m managing a lovely small home where at least half our residents have dementia of some sort, but everyone mixes-in and it’s a real home. It may not be as grand as the previous place and actually my salary is lower, but now I love my job and I know the residents are well looked after and happy.
A.H. – senior care worker, Scotland: I don’t like segregation of any sort. It’s not a good principle in life. Think how people used to be locked up in asylums. Anything could happen, they were defenceless. I’ve been to a couple of places that specialise in dementia but they’re just very nice ordinary homes. It’s not until you’ve been there a while that you realise. Generally, I think it’s better to have everyone together. Some people with dementia are very interesting, intelligent, and witty, and they make you think again. You have to be alert to amazing lateral thinking. I find the work very stimulating.