I’ve been listening to an author talk about a book she has recently published on her mother’s dementia based mainly on many recorded conversations they had about her experience of living with dementia, and she said at one point that she is “Sitting on a gold mine”. I am sure the book is terrific, and listening to the reviews of it today, it does sound like a more positive book written by a family carer, but that particular comment is deeply concerning.
As my blog There is Big Money in Dementia written some time ago suggests, there is indeed big money in dementia. It concerns me greatly the people with this disease are being exploited so much, even by those who mean well. It is not only Big Pharma, service providers and commercial organisations (e.g. Luminosity), but many of those very people who are ‘caring’ for us.
I’m sure many of the movies, books and other media out there mean well, and do some good, but the reality is, they are not necessarily the authentic voice of people with dementia, but the person without dementia’s interpretation of our experience, which they so often offensively refer to as ‘suffering’. It is also something to worry about, that people with cognitive impairment are ‘giving permission’ for their stories to be written and talked about and obviously I also have some concerns about the ethics issues around that.
I suppose… sigh… these are some of the reasons I continue to speak out.