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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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Photo of hudangsubuh jahari
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Photo of Duane Pierce
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Great idea ilan. This can go beyond helping the care givers for sure. As someone who's father has come down with dementia, one of the hardest things I had to adjust to was my father would no longer be able to share his stories with my kids (his grandkids). I know from my own experience grandparents share wonderful stories to grandkids, and having something like this would that story element.
The stories can also bring the person in the hospital/ward to life better. Again my experience is the people in the ward have names and a few photos, but nothing that truly captures their experiences that the people around them can see. Hope it comes out as a developed idea. Keep it up.

Photo of ilan
Team

Hi Duane Pierce , Thank you for the recommendations and additional thoughts. I'd love to hear more from you about the ways you've seen people share stories, and more about your experience with your father. I'd love to find a way to bring the person to life better in a hospital/ward. Given the time constraints of workers in that setting, I haven't yet understand their full needs in order to solve the problem of humanizing the person into something beyond a "patient." I'd love to chat with you to learn more about your experience and further develop this idea. Would you be free to chat in the next couple of weeks? Perhaps I can also run by you some of the other feedback I've received.

Photo of Duane Pierce
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ilan - I'd be happy to talk more on my experiences sometime. I'm based in Singapore which may make times slightly tricky but I can arrange a morning or evening time week of Dec 11 or the week after if that suits.
Duane

Photo of Layne Hubbard
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Dear ilan,

I think this is a very important initiative; and, like many accessibility works, it has great implications for our population as a whole.

You might check out this Four Bears project (customized children's books about family members), as an example of templating and scalability. https://www.kickstarter.com/projects/1899753965/fourbears-customized-childrens-books-about-your-fa

I especially appreciate your focus on empathy and creativity. While much of our high-level information about relatives seems to be focused on significant life events, I think that our mundane experiences often show a lot about who we are, and help others get to know us more intimately. It might be interesting to think of how to incorporate mundane, daily experiences into the stories as well.

Finally, you may want to check out resources on "digital storytelling" as a way to incorporate multimedia experiences into the stories. These can create a cross-sensory experience, while also making the stories accessible to family members of many different ages (through images, sound, text, etc).

Here are some resources on digital storytelling:
Community Resources: https://www.storycenter.org/
Resource Overview: http://www.schrockguide.net/digital-storytelling.html
Coursera Course: https://www.coursera.org/learn/digital-storytelling
Free Apps for Prototyping: https://elearningindustry.com/18-free-digital-storytelling-tools-for-teachers-and-students

Best,
Layne

Photo of ilan
Team

Thank you Layne for the amazing links and recommendations -- for the tremendous wealth of information! I'd love to learn more about what you mean by mundane experiences. Do you mean small details (for example, something like: she routinely hums to herself while chopping vegetables but disdains formless elevator music to such a degree that she'll walk out of stores with any such aseptic tones playing)? Or something else, something more detailed and developed? I wonder if there's a better way to capture mundane experiences in such a way that it evokes emotion from the person viewing/absorbing those experiences -- some vein of recognition?

Also, I'd be interested to hear more about your comment related to accessibility, too. I wonder if you'd have some time to chat some time to hear more about your thoughts in detail? I can't figure out how to chat directly via the OpenIdeo platform. But if you're interested, please feel free to send me a Linkedin invite: linkedin.com/in/ilanbrat

In the meantime, I'm going to spend more time absorbing the resources you sent me. Those prototyping and other resources will be extremely useful. Thank you again!

Photo of Layne Hubbard
Team

Excellent! I'm glad they were useful to you.

And, regarding the mundane, yes—I'm precisely referring to those small details you described. Even the story you told in the parentheses gave me a compelling image of this person. I think these small details are transformative. For instance, check out these animations from a Korean artist on love; I think they are powerful because they describe the small moments we share. https://pulptastic.com/korean-artist-beautifully-illustrates-real-love/

Regarding accessibility, here's a resource of user personas for designing accessible web experiences. In design thinking, we're often advised to "design for the extreme" because, in doing so, not only do we meet extreme needs, but our resultant designs are often more universal to people in many different situations (check out "universal design" or "ability-based design").

Personas for Accessibility: http://uxmag.com/articles/book-excerpt-a-web-for-everyone
Ability-based design: https://vimeo.com/218330703
Design for the Extreme Toolkit: http://www.designkit.org/methods/45

In your project's case, I see how designing for someone with dementia also has the benefit of creating designs that work for people in many different circumstances. In building the platform for those with dementia, you may also create great value for many unexpected and surprising use cases.

Best,
Layne

Photo of Joanna Spoth
Team

Hi ilan ! Great to see you actively collaborating in the Challenge. Have you made revisions to your idea based on feedback. If so, please update the content of your idea! You can do this as many times as you'd like throughout the challenge. It's helpful if you mark in the text where the update is so we know where to look when we're reviewing it. A bold "UPDATES" heading with a description of what's changed underneath would work. Excited to follow your idea!

Photo of ilan
Team

Thank you Joanna Spoth for the guidance and the recommendations! I have received feedback from multiple people and will be making updates to the idea. Thank you again!

Photo of Jacob
Team

Hi ilan ,

Really like your concept,

Don't suppose you've come across this;
http://www.interactiveme.org.uk/

Looks quite similar to what you're proposing?

Photo of ilan
Team

Thank you Jacob for the kind comment! And thank you for pointing me to InteractiveMe! There are clear similarities. Super interesting. Thank you for the encouragement!

Photo of Henning
Team

Hi Ilan,
I read your idea which big interest. I think short stories are a perfect way to convey their humanity. But I actually that you maybe could expand your idea. In addition to the story the visualisation could even increase the impact. A short film with memories, favourite music, holidays and formative events through the live. This is just an idea as your expertise is in writing. I curious about the development of the idea and wish you good luck and thanks for your commitment.

Cheers
Henning

Photo of ilan
Team

Thank you Henning for the suggestion! Can you tell me more about the idea? How would the video capture the memories?

Photo of Henning
Team

Hey Ilan glad you like the idea.
My thought was, a the could support the short stories. So the video could be only a couple of minutes long and show the highlights mentioned in the short story itself.
According to research, by listening and having visualisations the absorption of information can increase highly.
For example: The video could include pictures or small video clips from the memories mentioned in the short story.

Photo of ilan
Team

I'd love to be able to make that work. It's an interesting idea. Maybe if no video exists of the memory one could recreate it, or talk about it in an interview?

Photo of Henning
Team

Yeah, that right. I think the possibilities are endless. A recreated scene, like a role play from old memories. A short film in form of a remake visualising habits or typical personal traits from the described person in the short story.
As you mentioned interviews or filmed conversations are possible as well.  

Photo of ilan
Team

thank you for the feedback and idea! I wonder if there's a way to automate some part of that in order to make it less costly or more scalable? Maybe there's a way to help the families do it easily themselves -- or at least some part of it. Some kind of template structure for a video or something.

Photo of Henning
Team

Just as an idea, by designing a framework for families and caregivers, which explains or suggests how a video could look like. This framework could include steps that are necessary to create an impactful video. It could contain example stories, characteristics from people and ideas how to create a video. This would allow families to create their own videos.
 

Photo of Wendy Carmical
Team

I so wish I would have videotaped my Mom. It is hard to grieve for who you've lost when you still have the person here, although a somewhat new person.

Photo of ilan
Team

Hi Wendy! Thank you for your comment! I’d love to learn more about your experience. Do you mean that you think a video would have helped you come to understand her better? Also, I am interested to hear more about your mention of videotaping. Do you mean videotape her before her dementia diagnosis (I am assuming by your comment that she had dementia, but I may be mistaken).

Photo of Wendy Carmical
Team

Hello: I should read slower, I guess I assumed there was a video component. I wish I would have captured my Mom in the early stages, we found out way before there was any obvious impact. Video, taping, just wish I had something with her voice.

Photo of ilan
Team

I understand better. I can understand why that would be powerful. Perhaps we could incorporate a video-recording or even just an audio-recording function...

Photo of Bettina Fliegel
Team

This is a beautiful idea! Would families need to put their loved one's story online? Would it be possible to create stories for personal use within families?

Photo of ilan
Team

Hi Bettina! The stories don’t have to go online. They can be written as PDFs, or live online in a private setting. I have the capability now to make stories private on my early version of the site. But maybe there is a better way to address your question. Can you tell me more about what made you think of that? Thank you!

Photo of Kate Rushton
Team

Hi ilan!

It is great to have you in the challenge.

I noticed this in your post - 'I would love to hear ideas from the OpenIDEO community on the best ways to preserve a person's humanity online 'I am going to tag here a few people who might have some ideas: Caroline who posted Dementia Unplugged in the research phase, Liliana who posted Including your children in caregiving. and Kinjal, Scott, Tyler who posted Extending Independence 

Photo of ilan
Team

Hi Kate! Thank you for the connections! It looks like you and I both worked with Euromonitor. I enjoyed the short video on sundowning and would love to connect with Caroline. I will check out the other projects to mentioned. Thank you!