Campaign to archive dementia love stories stumbles

James M. Berklan
James M. Berklan

Jane Youell appeared to have hit the jackpot with her timing, but now that's exactly what she still needs: a financial jackpot. The British researcher is attempting to build a first-ever love-and-dementia archive.

But it appears that there might not be enough affection for The Relationship Project, as she calls it.

I caught wind of her quest to raise 1,500 British Pounds (about $2,300) through crowdfunder.com on May 19. As her self-imposed two-week deadline approached last night, only 23 people had made pledges and they totaled just a little more then one-third of the goal.

One would have thought that given the tailwind she inherited on the subject — at least in this country — she would have raised more. I'm referring, of course, to an Iowa court case that attracted broad attention around the United States, and beyond. Authorities prosecuted a man for allegedly having sexual relations with his wife after doctors had told him her Alzheimer's disease was too severe. It was called a new frontier.

He was ultimately acquitted. Whether he actually had sex with the wife behind a curtain in the room she shared with another resident may never be known. But the case did do one very important thing: It opened the door to a lot of dialogue and recommendations.

Experts said it pointed to the need for long-term care providers to get processes and policies better in place. Consumer advocates championed greater freedoms for those with Alzheimer's. Our own award-winning "The World According to Dr. El" blogger, Eleanor Feldman Barbera, rang in with an outstanding column discussing all the challenges and considerations.

Youell, in essence, wants to build on that, although there is no apparent indication that her project is in response to any part of the Iowa case. They are, in fact quite different animals, in many ways. Yet they are quite similar on many levels, as both feature parties seeking to dignify and justify intimacy in people with  dementia. This devotion to archiving dementia patients' love connections has been with Youell for a long time. 

She is an experienced academic and researcher — on this topic, no less — and she wants to take on this project scientifically as part of he work toward a doctorate degree at the University of Northampton. If you want to learn more about her or her research, click here.

I can't necessarily fully endorse the project, and I'm not sure what Youell's plans are if she doesn't raise the money she seeks, because her representative did not respond to a request for comment. But something tells me she ultimately will find a way to move forward with the project.

If she does, she could wind up with a new kind of riches.

James M. Berklan is McKnight's Editor. Follow him @JimBerklan.

                  

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McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Emily Mongan.

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