On Monday night this week, there was a television program in Australia (4 Corners) on the ABC which featured three couples with dementia. I had a reasonable idea it would be full of suffering, although it showed a lot of love and living as well as humanly possible as well, but from all accounts, it was very depressing to watch. Most I know who watched it reported they wept for some of the program, or for some time afterwards.
These stories, whilst important documentaries, keep the narrative of suffering alive, and although this is the reality of dementia for some of the time and much more of it towards the end, as it is with any terminal disease as we start to die, it is not the full story.
Relative to this program, and my brief response above to it, people with dementia have been advocating about being included for over twenty years, but until more recently, the narrative of dementia had not changed away from the discourse of tragedy and suffering.
However, due to those of us who refuse to isolate ourselves or feel ashamed in spite of being bullied and defamed for it, and who focus on what we can do, not on what we cannot do, the narrative has changed dramatically. Thankfully, more often now, many people without dementia have not only started to listen and take notice, they have started referring to it.
But, it seems there really is big money in dementia for people without dementia, as some are now being paid to teach our new narrative.
People with dementia are still waiting to be paid for anything we do…
When I first became an advocate, even the people with dementia who were public advocates were often talking of their ‘devastating dementia journeys’, and I soon realised that the negative discourse had been so overdone, that it was then, and still is 100% unhelpful to us all, and also very unhealthy.
Family members and care partners who have become public dementia advocates have started to use our new narrative, almost if it is their own, even though some do say it has come from the growing and increasingly loud voices of people with dementia. What I’d really like to see is for them to develop a new narrative for themselves, not use ours; and then to rub salt into our wounds, otherwise known as our disrespecting our expertise, some are also now getting paid to teach our new narrative.
My term Prescribed Disengagement® only has the Registered Trademark symbol on it, because I applied to have it registered, went through a very stringent process, and paid quite a lot of money for it once it was approved. Perhaps I should be registering a lot more of my work…