They all immediately think Alzheimer's. My mom constantly reminds him that she's already told him aomething 10 times when he asks again, friends and family say he's doing great because he seemed fine last time they talked to him and other family members think he's using the diagnosis to be lazy and depressed. Does anyone have a good reference for how I can politely explain this awful disease to them? I don't want to spout all gloom and doom but I'm a little tired of the comments- "he's fine, he just mess to get a hobby". "I JUST told you that" etc. these are all good people, just clueless :(
So, you are right. These clueless people need to be educated. Does Mom go to doctor appointments with Dad? Has a doctor or clinician explained the disease to her? Are there support groups in you area for caregivers? Look at literature, articles, brochures, etc. that explain Pick's. Look at more general material on how to relate to people with dementia. Pick out one or two that you think might be meaningful to Mom. Don't overwhelm her with a tall stack -- start with basics. She is the one who really NEEDS to understand his disease if she is to be a successful caregiver for him.
Would Mom be willing to use this website, and join in discussions? Maybe it would be effective for her to see others struggling with caring for a loved one with dementia.
As for the other people, once Mom is educated the rest should be a little easier. You could give each on the best brochure you can find. I think you shouldn't start arguments with them, but it is fine (and responsible) for you to state the truth. "I agree he looks lazy, especially compared to how active he used to be, but this is not his choice. It is caused by abnormal amounts or types of a nerve cell protein (tau) in his brain’s frontal and temporal lobe. That area of his brain is shrinking." Figure out a way to say this that your relatives would accept, but try hard to get the message out that this is a real disease with real physical causes.
I sincerely wish you great success with this educational campaign. This is a progressive disease that will continue to get worse, and the sooner his friends and relatives can accept that, the greater his chances are of feeling accepted and at peace.
Some day I will need to read it over as I never can keep it straight the difference between dementia and Alzheimer's. Neither of my parents have it, at the moment.
Would your relatives/friends be able to watch some short videos? Here's a longer one at 18 minutes explaining the disease:
https://www.youtube.com/watch?v=Ue3y60AsMCE
Good luck...it's hard to get people to accept changes in their loved ones.
youtube/watch?v=_FsxCyxHUPY&list=PLt-RiYlvc-KtzRI-W3u-EXfE6leVELzkZ