We need to hear about the advocacy project from someone we have a relationship with and trust. If somebody just asked me to join an advisory or research group, I wouldn't know what it was or how to do it. I also really need to know the specifics so that I can feel comfortable, and I think that's what we're missing in a lot of cases.
Q: You've accomplished so much as an advocate for people living with dementia, including becoming an author of books for children and adults. What inspired your most recent book, Dementia Strategies, Tips, and Personal Stories?
A: The book is to help people live well, and to know that even after a diagnosis of dementia they have a responsibility and a right to live happy lives.
I had read several books that were above my ability to understand, and I thought, I need to write a book that's just very common language and talk about the tips and strategies that I've found to help me live well.
I also talk about some things that are negative, but they did happen to me, and since they are likely to happen to other people with dementia, why not bring them out into the open? The book is self-published because I knew that if I sent it to a publisher, they'd want changes, and I didn't want that. The book really is from my heart.