Why did you choose Foucault as a lens?
I chose Foucault as a lens because he addresses the psycho-social and political aspects of illness and medicine. As each generation manages to deal with different threats of illness, both medical advances and political attitudes focus on the next threat to the population. Currently the world is trying to make sense of the threat both socially and economically that dementia presents. Until recently people with dementia were separated and corralled in care homes, cut off from family and society, left to die. In the same way in the past, lepers, the indigent and the insane met similar fates. The rise of the medical model of treatment is not much use for people with dementia as there are limited treatments and no cure. So it is important that people with dementia are accepted by and encouraged to take part in society as best they can. It is a challenge for civilians and politicians to consider their own values: are human beings with a cognitive disability allowed to have a full life?
In particular: the Panopticon where prisoners are kept stable by the threat of an unseen but all seeing guard resembles some arrangements in care homes. Records of care and daily lives are available for family to read. Care Homes are inspected. If a person with dementia is living at home, an official will visit the client and the carer before any help is given. There are different models of care dependent on how much money the client has.
People with dementia are restricted as to what kind of work or social life they are “allowed” to have. They lose their autonomy, needing a carer with them in order to take part in society.
Dementia has yet to benefit from the “medical gaze”. Actual firm diagnosis can only be given after death when the brain is examined, but people with dementia are subjected to a barrage of tests prior to diagnosis. After diagnosis, people with dementia are encouraged only to go home and tidy up loose ends before they die.
Political will is mainly focused on cure and on the cost to society of dementia. Dementia friends create a them and us situation and to think someone can watch a video for fifteen minutes and be considered a Dementia Friend is ridiculously superficial.
Just as in the past, indigents were separated from society, people with dementia are largely separated from society because its situation is too complex for their safety. I fear this will change only slowly: look at how many public spaces and domestic housing still need to be adapted for wheelchair users for example.
I asked at my local branch of the Bank of Scotland if they had had dementia training: “No, oh, well, I think there are some leaflets in the back office…”
It is all very well to make public servants such as bus drivers aware of dementia, but how does a bus driver deal with both an angry queue and a passenger with dementia? The same may go for supermarket cash desks. Perhaps we will see Dementia friendly signs over one of the supermarket cash desks along with “cash only” “hand baskets only” signs.
Many people are doing sterling work towards a better society for people with dementia and they need support of all kinds if people with dementia are to live the lives they could live.