DASN (Dementia Advocacy and Support Network) International is an online support group for people with dementia. Thanks to one of its members, Morris Friedell, for pointing out an article in the February 2008 edition of Dementia about a small study by Welsh researchers on the benefits of participating in this group.
The article points to the collective strength of the group, and to the importance of members helping each other.
But what struck me was the article’s recognition of the small but growing number of people with dementia who speak for themselves. “Gradually, people in the mild to moderate stages of dementia are developing a 'voice' and rejecting the passive patient role,” the authors of the article wrote.
I hope that this recognition is a growing trend. Many of my friends with dementia have carefully thought through issues about scientific research and care. Why not seek input from them more often? Richard Taylor was a keynote speaker at Alzheimer’s Disease International’s conference in Singapore last March. I’d love to see more large care and research conferences include people with dementia as speakers.