It is, obviously, still World Alzheimer’s Month 2015, so for Day 24 #DAM2015, and also making my life a little easier this week, I have found another article I wanted to re-blog, written and published on World Alzheimer’s Day this week by a colleague who I have not yet had the pleasure to meet in the UK, Damien Murphy, and posted on twitter where I first saw it.
Now that people without dementia are starting to learn the lessons and speak up for us as well, I believe we will actually start to see change. I have in fact, written about these things many times before, so Damien is really just agreeing with me, and supporting the other point of view.
The surprising thing is that if I had written and published this article, it is likely I would have been bullied offline again, as so often, it is the family care partners who object so strongly to the voice of people with dementia who dare to speak up for themselves. Thanks for your support Damien!
From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of diagnosis; and more recently from the excellent eloquent testimonies of the likes of Kate Swaffer and Wendy Mitchell in their daily blogs, I have become increasingly concerned about the overwhelmingly carer-focussed approach in many areas of the field of dementia care.
The predominantly care-for-carer approach has prevailed for many years. The Alzheimer’s Society was founded as a carers’ organisation in 1979 and Carers UK has a strong national voice, incorporating Crossroads care now. This support is of course absolutely necessary, but it must not be at the expense of the voice and support of the person with dementia. I am often told in social situations when talking about what I do that ‘it must be worse for the carer’. I always try to point out that it is difficult for both parties in different ways and they cannot be compared. Although there are many examples of the voice of people with dementia getting a greater profile (the Dementia Engagement and Empowerment Project – DEEP – being an excellent example) they are still in their infancy and there still remains an uneven playing field where predominantly only one side of the care-giving relationship is heard.