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Short life stories build empathy for people with dementia who can't tell their own stories

Professional writers capture short, digital life stories for people with dementia to help their families continue to see their humanity.

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Who is your idea designed for and how does it better support family caregivers as they care for a loved one with dementia?

Family caregivers burnt out by all the things their loved ones with dementia can no longer do can lose sight of their loved one as a full person. This project is for them. Digestible life stories can change that dynamic by renewing caregivers' sense of empathy for their loved ones, preserving memories and providing an easy activity to do together. The stories also would help paid in-home caregivers (who often give family members temporary breaks) see the humanity in the person with dementia.

A person with dementia loses her ability to tell her own story, making it harder for her to convey her humanity, even to family caregivers. Life stories are missing from dementia care, but they can be crucial to helping families preserve their sense of closeness to their loved ones. 

I am a professional writer, and I propose building a network of journalists that captures short, digestible life stories for people with dementia by interviewing their family caregivers about their loved ones. These would be short stories, something that could be read in 3 to 5 minutes, providing a capsule of who a person is.

Depression and disillusionment resulting from the stress of caring for someone with dementia is one of the biggest risk factors for family caregivers. Clinical research in the U.K. shows that life stories can be beneficial for families by helping restore their feelings of closeness to their loved ones. 

But it can be emotionally challenging for families to write life stories for their loved ones. They're too close to the story; sometimes don't know which questions to ask; and have trouble capturing the essence of their loved one concisely.

That is where the professional journalists would solve the problem. They can be sensitive, third-party observers who craft beautiful stories.

The families would have full control over what gets published, and they would provide favorite photos and music and other information about their loved one's favorite things.

This idea is scalable because there are thousands of freelance professional journalists who are skilled enough to write these short, digestible stories, and we could develop a template that guides journalists on the best way to craft these stories. The template would still allow for creativity, beauty and personalization of each story, but provide a structure of the type of information that would go in each story.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

Through connections in the dementia-care community in Chicago, we could find families who would allow a professional journalist to interview them about their loved lone's life story. We'd then ask the family beforehand to discuss how they feel about their loved one. After the digital life story is created and published, we'd discuss with them whether or how they use the story, and if it's helped them understand their loved any differently than before.

What skills, input, or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

I would love to hear ideas from the OpenIDEO community on the best ways to preserve a person's humanity online -- how do you best capture the essence of who a person is to build empathy? I'd also love to hear people's experiences caring for people with dementia, and feedback on designs for a digital repository for capturing the stories. Also, are there other activities or information family caregivers would find valuable to have on hand through this process?

How long has your idea existed?

  • 4 months - 1 year

This idea emerged from

  • An Individual

Tell us about your work experience:

I worked as a journalist for 10 years at The Wall Street Journal, and now I work in business research. I have an entrepreneurial inclination, and developed this idea through a discussion with a person I got to know whose father had Alzheimer's.

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