I've actually known people to say e.g., 'But at least people with dementia are happy - they must be, if they don't know what's wrong with them.'
Maybe some are, but it's certainly not the case for so many.
My husband who died almost 2 years ago had vascular dementia 15 -16 years. Mild memory problems and personality changes having started following a stroke a few years earlier shortly after his 62nd birthday. A good natured man, after his stroke at times would be easily irritated, then bad tempered and eventually more often angry than not. Then he became extremely verbally aggressive. We managed alone at home for about 10 years then he fractured a hip, in hospitals 6 months then not allowed home and spent his last 5 years in a care home.
I have a group of friends of many years who knew us both well, all now living a distance away but we are in close touch. None of whom have any personal knowledge of dementia and this is their attitude - dementia can't be so bad because they don't know they have it. Two seem convinced those with dementias are happy (as Iris Murdoch portrayed by Judi Dench was happily dancing at the end of the film of that title.)
They have asked about my husband, asked about dementia, I have tried to tell them - to answer questions honestly without ramming it down their throats. They have read articles - sometimes sent them to me.
But they are no nearer any understanding and the attitude is as quoted above. They have read about Wendy Mitchell, heard her on the radio and on TV, and they seem to be convinced she is typical.
It makes me feel they think I have exaggerated when I have touched upon the realities. Perhaps it is what they want to believe. I now say less and less and having received a recent email from one friend talking absolute nonsense, I have decided to ignore any further discussions on the subject.
I think fear causes people to want to believe that " people with dementia can live well". Yes in the early years we did have times when this was possible, and I tried to make life as good as it could be for as long as possible. Not easy. But "living well" throughout the course of the disease is not possible as we know.
Another thing difficult for others to understand is that there is no set pattern of dementia progression. How can one 'explain' such a range of different symptoms which can develop and that not everyone will have this or that one etc., etc. How to explain that there are different types of dementia, Alzheimer's and vascular being the most common but that there are other types... and so on...
Some of these friends do fear developing dementia, we are all in the older age group and they seem to believe dementia is solely the result of ageing. I have told them about early onslaught dementia but.....
Fear is the barrier and weren't we all fearful (to put it mildly) when we first suspected and then knew the person we loved was in the early stages of dementia.
People may be aware of dementia, but do they want to know about it? Perhaps that is only possible when they become in some way involved with dementia through a loved one, or a friend. I really do not know the answer....
Loo