When a famous person is diagnosed with dementia or Alzheimer’s disease it is very common for dementia fundraising organisations to ask them to “come out” about the diagnosis. That would mean that their name can be used to raise profile and strengthen fundraising.
Sometimes there is an argument that there is another benefit, which is that the famous person coming out will help "ordinary" people do the same.
For some people, letting others know what is wrong with you is really helpful. For others it is not. Whether they do that or when they do that should be up to them and their family. They should not be pressured to disclose their condition, and the idea that it’s always good for famous people to lead the way in this is uncomfortable for many of us.
Anyone with dementia has a lot on their plate and some decide that they’ll hunker down and get on with things. Others join groups, or set up dementia campaigning committees like the famous Scottish Dementia Working Group. Again, it is a matter of personal choice, based on how you feel, your personal skills and what you want to contribute. And what suits you personally.
Dementia should not be shameful, and it is clear that having dementia is less stigmatising than it once was. Nevertheless, a terminal debilitating illness is an intensely private sorrow, not fodder for campaigning. People who say it is a shame that Gene Wilder asked to keep his illness a secret until after his death are over simplifying this decision making process and putting the “cause” ahead of the individual. His was a very public life, and his decision to keep it private at a time when he would have lost control of some aspects is perhaps entirely understandable.
We have a strange relationship with dementia and celebrity. The person who is the “poster boy” for Alzheimer’s will get dropped like a hot rock if he advocates euthanasia. Advocacy organisations who regret the silence of some celebrities with dementia should be careful what they wish for.