This is the most common thing I hear from people about my diagnosis of dementia, and is possibly the most common others with dementia talk about. Even some people with dementia say it to me; yes, even when they themselves know how insensitive it is to hear it said. It is an odd conundrum, and one that we all have our own way of dealing with. It is also for many of us, especially in the first few years of hearing it, upsetting and feels quite like an additional burden we have to deal with. No one ever accused me of not having other illnesses, and it is indeed mildly disturbing still that people with dementia constantly have to deal with this.
The late Richard Taylor used to carry a letter from his specialist doctor in his wallet, and even then was often accused of faking the letter. Christine Bryden sometimes shows her own brain scans in her power point presentations, calling it her ‘credibility slide’, and even then has reported having people accuse her of stealing the images! I have regularly been accused of lying about the diagnosis or my doctor being wrong, and now always simply suggest the person comes with me to my next neurologist appointment and offend my doctor themselves. Often, it is one of my doctors own colleagues!
Some people say, if you happen to remember something during a conversation, “see, you don’t have dementia after all!” This is also another reason why we need to get rid of the myths of dementia, and the constant impression that is all about memory loss. We have Memory walks, Memory cafes, Memory clinics, and so on, as if it is ALL about memory loss. A friend and colleague of mine from Scotland Agnes Houston has written a booklet about the sensory changes many of us have caused by our dementia, and too often, as these are invisible to others, they are not believed anyway.
When I was in Scotland recently, I was interviewed on BBC Scotland television, along with a lovely chap, Professor Craig Ritchie, an academic and doctor in dementia. Afterwards, he said to me, he had a bit of a light bulb moment whilst listening to me. I had talked about how we are mostly all getting diagnosed much earlier in the disease process, but being treated as if we are end stage; he realised that this is indeed true, but what has happened (or rather not happened) is that we are still being ‘treated’ or ‘managed’ as if we are all late stage.
With the push for earlier diagnosis, in reality most of us are in a much earlier stage of our dementias, but the health care sector has not yet caught up with that fact!
It seems clear to me, that until we change the post diagnostic pathway to one that is re-abling, proactive and rehabilitative, and supportive of our disabilities, as well as get rid of Prescribed Disengagement®, then nothing will change for any of us; the public misperceptions will continue, the continuing insensitive comments like ‘but you don’t look like you have dementia will continue, and will the push towards dependence on the health system for our care will simply continue.