The members of the early stage memory loss support group that my husband G used to belong to wanted to do something to help others who are just getting a dementia diagnosis.
The group facilitators asked the members of the support group what kinds of information they would like to share, took notes on what they had to say, helped them organize their responses into categories, and collected pictures of positive aspects of their lives: family, friends, hobbies, pets.
A sponsor was found to underwrite the booklet, and it finally came out late last summer. I think everyone in the group who participated was really pleased with the result.
Somewhat amazing to me is how little information like this there is: information and help for the person with the disease. Most of the information and the support groups are for the caregiver. Dementia is the only disease I can think of that has almost no support groups for the person suffering from the disease. (We live in a very large metropolitan area, and when G got his diagnosis four years ago, there were two support programs for the person with dementia - and probably fifty or sixty for caregivers.) That is not to say that family members who are providing care don't need support - far from it. But imagine if you had some disease, and your family could get help for themselves - and there was nothing for you. No place where you could share what you were going through with other people going through the same thing.
Only recently has the Alzheimer's Association, which traditionally has focused on research plus support for the families, created a position in their organization to be in charge of resources and programs for people with early stage memory loss. That's 28 years after their founding.