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Caregiving Is an Art

An online gallery of paintings, photos, drawings, cartoons, poetry, video, & stories by and for caregivers who support people with dementia

Photo of Mariah Burton Nelson

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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?

We think of caregivers as stressed and depressed. This project flips that script, elevating caregiving to an experience that "naturally" generates and benefits from creative expression. This online portal provides a peaceful, inspiring, validating place caregivers can go to any time of day or night to see their experience reflected in others' artwork -- and upload their own creations, however amateur. The message: "Caregivers are artists, each with their own stories to tell."

When caring for an elderly relative, one's own sense of self can get lost. Such alienation can increase the likelihood of exhaustion and burnout. 

Yet who has time for anything "extra"? 

Caregiving Is an Art redefines caregivers as natural storytellers -- and in this way, this project helps caregivers think about themselves, and their role, differently.  

Who hasn't found ways to laugh at the absurdity of dementia? Yet where do those stories go? Might they be captured through drawings, paintings, video, photography, or poetry? How about a cartoon?

The site offers caregivers a place to express themselves artistically - in a nonjudgmental, supportive environment. It's not about venting or problem-solving; there are other places for that. 

This site is about converting the pain, purpose, and problems of caregiving into something beautiful, thought-provoking, or helpful, both for the artist and for others.

What does it feel like to sit with someone who is repetitive, confused, or mute? How might that experience be expressed through a photo, drawing, or story? 

Caregiving Is an Art not only accepts uploaded artwork; it also encourages self-expression via prompts and lessons in the fundamentals of drawing, painting, photography, poetry, and storytelling. 

Former caregivers would also be welcome. They might have more time for such artistic expression -- and their work might inspire or educate current caregivers about the role and its multiple meanings and possibilities.

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

Perhaps we would start with writing classes and art classes for adults. These classes attract older people, many of whom would likely have caregiving experience. If we could find a way to give these people an assignment -- e.g., "express your caregiving experience via the artistic medium you're already exploring" -- we could begin to assess proof of concept. Asking a random busy caregiver to express herself artistically might be tougher, but photography could be an easy entry point.

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

What organizations are already encouraging artwork by caregivers? How is that going? The National Center for Creative Aging has a Creative Caregiving initiative. Caregiver.com hosts an annual Caregiving Art Show. Who else is doing something similar or complementary? How would we find artists and writers to give mini-lessons? Would the site need to be private, for registered users only, to encourage amateur submissions? Should we allow people to connect with others by commenting on their work?

How long has your idea existed?

  • 0-3 months

This idea emerged from

  • A group brainstorm
  • An OpenIDEO Outpost or Chapter
  • An Individual

Tell us about your work experience:

I serve as the VP for Innovation and Planning at ASAE: The American Society of Association Executives. This is a spinoff of an idea generated at an OpenIdeo Workshop -- posted here as GERI: Virtual Assistant for Caregivers.
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Team (4)

Meg's profile
Meg Young

Role added on team:

"Hi Meg, Any thoughts on the potential here, or how we might prototype it?"

Mariah's profile
Emily's profile
Emily Mann

Role added on team:

"Hi Emily! As you'll see, this represents just one segment of GERI. I welcome your thoughts!"

Jennie's profile
Jennie Smith-Peers

Role added on team:

"Hi Jennie! This would be immensely strengthened through your participation! Might the National Center for Creative Aging want to collaborate, or connect us with people or organizations that would?"

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Photo of Mariah Burton Nelson
Team

Today's Washington Post happens to have a photo essay related to Alzheimer's. The photographer was granted $5,000 by the Bob and Diane Fund to promote awareness of the disease. "The visual stories of patients and caregivers can humanize what is, in fact, a very cruel and dehumanizing disease," says Gina Martin, of the fund. However, the three selected images do not include caregivers, thus rendering the work of the caregivers invisible, as it so often seems to be.

There are so many arts programs for people with dementia and caregivers that the Aging and Mental Health journal and Art Therapy journal have published literature reviews on the subject. MoMa's program is one well-known example.

However, these programs are mostly focused on the people with dementia themselves, with the caregivers' inclusion seemingly more of an afterthought. Perhaps it's time to shine a light on artwork by and for and about caregivers themselves.

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