Alzheimer’s, Screening and Stigma
A report published on the Science Daily website yesterday explains that UK older adults were far less likely to want to access dementia screening than their US counterparts.
The premise of the study was to find out what difference access to universal health care made to access to services and screening in particular for Alzheimer’s. The findings were, well, it didn’t make a great deal of difference, in fact, UK patients sought the screenings at a far lower level.
Some interesting points I picked up from the study. The reasons given for Britons being less likely to want the screening were based on the attitudes and stigma that society places on people who have Alzheimer’s.
Interestingly, although none of the sample groups in the UK or US had diagnoses of Alzheimer’s
significantly more of the U.K. participants (48 percent) had close friends or relatives who have or had Alzheimer’s disease compared to U.S. participants (27 percent)
So it made me wonder if the concerns about being screened were not about the cost of treatment obviously in the UK as there is the free universal healthcare, but more from having seen family and/or friends suffering at closer range.
So the conclusion that
Even when taking into account education and race differences, Britons indicated greater concern with the stigma of diagnosis, with potential loss of independence, and with emotional suffering than their American counterparts
may be, at least in part, due to a closer experience of Alzheimer’s in the UK sample.
I hope these kinds of studies are not used to attack universal health care. I think there are a lot of other attitudes and perceptions at play rather than just ‘fear of the cost of Alzheimer’s’.
The researchers intend to extend on this pilot study with further studies.
One to watch.
Posted on January 16, 2009, in dementia, elderly, mental health, old age, older people, social issues, work and tagged Alzheimer, Alzheimer's disease, dementia, health, stigma, uk, United Kingdom, United States, US. Bookmark the permalink. 6 Comments.
Ok, so just trying to work this out in my head. In the UK, there is universal health care, so there might be more diagnosis of Alzheimers, explaining why more of the participants had friends or family with it? Could that be possible?
Also, if you know someone with the diagnosis, you know the problems they face, making you not want to deal with that yourself…thus not wanting the screening.
I wonder if the communities that this study came from (Indianapolis and Kent) had any bearing on the results. They’re significant populations, but there could be something about the place that skewed the results…
I certainly think that the difference in the number of participants have closer contact with someone with Alzheimer’s makes enough of a difference for some kind of conclusions to be drawn. I hadn’t honestly thought about more people having diagnoses because of the existence of universal healthcare.
As for the communities too, that’s another factor. As regards Kent (I know nothing about Indianapolis) it is one of the more affluent parts of England. I wonder if that does make a difference. I guess that’s why university researchers do their job though!
Bradford University have done some great research into the cultural determinants of the onset of Alzheimer’s:
http://www.brad.ac.uk/acad/health/dementia/research/
I think that the US has always needed universal health care but our NHS and research institutions have swallowed the market model of units and metrics and pharmacological drivers even though most people in the risk area of Alzheimer’s still hold onto the belief in a non driven model of health and social care.
Part of the problem of Alzheimer’s is the disconnection of people as they get older from societal recognition, especially if they come from what we now call the ‘underclass’, but the problem of giving time and attention to our relatives in the way we need and want to affects all social classes.
The need for a balanced connection between detached and research driven paremeters of research in the US and the UK is really needed. The US has always assumed an ‘underclass’ is neccessary for the market to work, the UK has a very different historical experience of the struggle to develop a welfare state.
I think that we need to recognise that Alzheimer’s is a package of ‘forgetting’ welfare state aspirations that mirrors the cultural ‘forgetting’ of people and of situations they adapt to in their relationships, social and working lives that diminish them, little by little.
It’s always struck me how we’ve forgotten what it’s like to expect a lot out of our lives as time goes on, how people become ‘carers’ and ‘saints’ in intolerable situations that if they were properly deconstructed would make you think why are these people even living together? How many ‘old couples’ default into lives where they dement each other, when what they really need is counselling and a way into a more productive way of thinking and living.
I know that Alzheimers and dementia can be hereditary and can be to due with all kinds of substance abuse or physical deterioration but I think also that as a society we don’t look and listen carefully enoough into what it feels like to be a man or a woman from whatever background as you get older, we assume too much and expect too little back in research.
Are social and community services gearing up for Growing Alzheimers or Growing Older?
this is also interesting:
http://www.lib.umd.edu/drum/bitstream/1903/3909/1/umi-umd-3758.pdf
Soapsoane – Thanks so much for that and the links. Interesting stuff. I think there are so many factors involved in dementia in general and Alzheimer’s in particular that it is difficult to draw conclusions.
Honestly, I don’t think social, health or community services manage growing old very well at all, certainly not to a sufficient level. There are so many other calls for the financing – but at some point the balance will have shift.
Interesting. I think you are right – there is a stigma about Alzheimer’s in the UK and a great deal of fear.