Problems with professionals

I have attended many meetings, about dementia projects, and I am now starting to doubt the fact that we are there to help out.

Many professionals chair these meetings but do not seem to know much about this illness, simply because they rattle through meetings,  but do not seem to allow enough time for people with real memory problems to participate.

I spend a lot of time trying to take on board what is being said, and trying to consider my answers, before saying anything

But as always, before I can answer, the subjects have been moved on to the next topic.

I was at one meeting where a person with dementia raised his hand and started asking a question, only to be told to wait until the end of the presentation to ask questions.

This professional clearly did not understand that we sometimes struggle with short term memory problems, so by the time the presentation has ended, our questions have long gone.

Some of us cannot write notes, so this becomes very difficult

I have Lewy body dementia, but also struggle with short term memory on most days, and do not have prompts, as no one knows what I am thinking.

Surely if these professions really wanted us involved they would either allow time for more questions, or would allow a person with the illness to chair the event.

Many of these meetings are frequented by professionals who seem to high jack everything, stopping us having our say, possibly because they assume that they know better than we do.

I sometimes think that I am wasting my time in attending these meetings , and guess that I am close to giving up altogether. But I also know that others must feel the same way.
So if I stop going now I may well fail others.
Sometimes professionals use big words, or medical jargon which means nothing to me these days, an I know that I am not alone. When I was working I used many big wors, which no longer gave a meaning to me these days.

We must try to change others attitudes towards us , and get the professions to be move respective than they are now

I live in hope that some day things will change, and we will be there for our expert views, and not be used simply to tick boxes.

So if you are hosting meetings with people who have dementia, please allow us time to think  and answer before moving on, and do not assume that you know better, because it's only when you live with this illness that you really understand the problems.

Treat us with the same dignity and respect, that you take for granted


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