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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?"

15 comments

Join the conversation:

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Spam
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.

Spam
Photo of Bettina Fliegel
Team

Hi Team.
I love this idea! I wonder if using social media to bring attention to the project might be a way to share with the broader community as well?
Are you thinking of creating a You Tube channel with short instructional/ idea /inspiration videos? I wonder if reaching out to artists who teach at local "art leagues" might be a place to gauge interest in participation?
I like your idea to reach out to older adults taking art or writing classes. Maybe start with a "call for art" and share it on a Facebook page to get feedback on the idea?

Mariah - Are you familiar with "Arts and Minds?" I posted about the program during the research phase. I wonder if the Idea here might serve as a platform to share art created, by or for caregivers, in a program like Arts and Minds?
https://challenges.openideo.com/challenge/caregiving-dementia/research/arts-and-minds

Spam
Photo of Mariah Burton Nelson
Team

Hi Bettina Fliegel - thanks for pointing out the Arts and Minds idea. Yes, we're thinking along the same lines: the healing power of art. Just posted a comment over there.

As for social media - yes to the YouTube channel, yes to the local art leagues, and yes to the FB or Twitter call for art. Great ideas! I'll try FB and Twitter and see if I get any takers. Thank you!

Spam
Photo of Mariah Burton Nelson
Team

Here's the FB post, just in case others want to do something similar. The Twitter post was similar but shorter.

Calling all art by caregivers: My OpenIdeo team and I are working on a project idea designed to encourage caregivers to convert their pain, problems, and purpose into artwork. Please post or send images to me. Former caregivers welcome. We're redefining caregivers as storytellers, and their stories can be on any subject. We're focused on caregivers for dementia, but any caregiver art is welcome at this idea-testing phase. As for: Might this work? Please comment at the link below. [Included this link] Thank you!

Spam
Photo of Bettina Fliegel
Team

Mariah -
This is great. Are you asking folk to submit to your FB page, or did you create a new FB page to test the Idea? Either way maybe link it to the Idea post above and put a note in the title asking caregivers, or anyone who wants to create art to honor a caregiver, to post on the linked FB page? (I do not use FB often - Can someone post on someone else's page? or would one put it in a comment?)

Spam
Photo of Mariah Burton Nelson
Team

Hi Bettina,

Oh, sorry I wasn't clear. I just posted it on my own FB page (and tweeted it) to see if I could drum up any friends or followers who fit that double description: 1) caregivers/former caregivers who 2) have or want to create some artistic something.

As I think about this, I'm afraid we'd need to cast a very wide (AARP-sized :-)) net to find these people, since many caregivers do not think of themselves as artists, or won't have time.

That's where your Arts & Minds concept comes in handy: We could teach them -- while providing support and networking re: the caregiving process. And help them get over the "but I'm not an artist" hump.

Back to FB: One COULD create a page dedicated to this - but for now, I'm trying to "drive" people to THIS platform, so the OpenIdeo folks can directly see how people are responding to these ideas.

Speaking of ideas (and questions and answers), please keep them coming, one and all!

Spam
Photo of Mariah Burton Nelson
Team

So far I've gotten one very-enthusiastic response to the FB post: A caregiver for both parents who is in a "women in transition" art group, and uploaded one of her paintings along with her caregiving story. Others have shared the post and liked it. Here's the link to the post by Heather Owens: https://www.facebook.com/MariahBurtonNelson

Spam
Photo of Bettina Fliegel
Team

What a wonderful FB post! It makes me wonder whether in addition to sharing art caregivers will also use this as a platform to share stories as Heather did. Exciting stuff!

I can share the idea and FB prototype with some artists. Not sure how many are caregiving or have done so in the past, but I believe some may have been in this role. I can send them the link to the idea here. How would they share their work if they would like to post it?

Spam
Photo of Mariah Burton Nelson
Team

Hi Bettina, What a superb and generous offer. My FB page is public, so artists can post images there - or here, if they want to create an account, except I don't see a way for images in these comments. Here, they could at least tell their "how art helped me survive the challenges of caregiving" story here, with a link to any online work. Either would be fine.

As for sharing stories as Heather did - yes, her post brought that to mind too. Of course people would want to tell their stories in addition to posting art, so we should include that in the description. I think it's locked for review through Saturday, but I'll add that part later.

I learn so much from your good questions and observations, Bettina. Glad to be working on new challenges together. Thank you!

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Photo of Mariah Burton Nelson
Team

Another small step toward proof of concept: A second FB poster, a former caregiver, uploaded a photo of her own large painting with her late mother sitting in front of it. Said she recently rented an art studio, and working there helps connect her to her mother.

This raises a new twist: That former caregivers might use art to remember or commune with loved ones who have died. Perhaps a workshop could be offered to support former caregivers, helping them through their grieving process by encouraging artistic self-expression.

Current caregivers might attend the same workshop, since caring for people with dementia involves so much mourning and loss, even while the loved ones are still alive.

Spam
Photo of Jennie Smith-Peers
Team

We could certainly pair this idea with the Creative Caregiving Guide - At the NCCA we are working hard to expand programs like Arts & Minds (MoMa also has some great resources around their museum based programming for people with memory loss) - the tricky part is money. Who will fund groups to allow them to do the training of the staff? Also, performance spaces have yet to be explored as dementia friendly spaces -- a great a new frontier! :-)

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Photo of Mariah Burton Nelson
Team

Hi Jennie Smith-Peers ... fabulous co-creator of this idea and the GERI: Virtual Assistant for Caregivers idea...

Arts & Minds sounds amazing. Would be so cool to enhance or expand that program. Glad to know about the Creative Caregiving Guide too.

Spam
Photo of Bettina Fliegel
Team

Hi all!
Jennie Smith-Peers  -
Thanks for telling us about the National Center For Creative Aging and their Creative Caregiving Guide. Are you affiliated with them? A friend is a museum curator and she pointed me to the great work that Arts and Minds is doing, which lead to my sharing it in a research post. By coincidence the Director of Arts and Minds, Carolyn Halpin-Healy, was invited by the OI team to the NYC Dementia Workshop. I was there as a facilitator and we were on the same team! (If you have time check out the team's idea, "Groceries For Care.")

Carolyn Halpin-Healy 
Hi Carolyn. Arts and Minds has come up in conversation in the comments here. Any thoughts/feedback on this Idea? It was developed at the Washington, DC OpenIDEO Dementia Workshop, last week.

Here is a link to the Research Post I shared re: Arts and Minds. https://challenges.openideo.com/challenge/caregiving-dementia/research/arts-and-minds (Mariah, from this Idea, posted a comment there too.)

Spam
Photo of Jennie Smith-Peers
Team

I am the executive director of the national center for creative aging. Carolyn is terrific. Glad to hear she was part of the NYC workshop.

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Photo of Jennie Smith-Peers
Team

Bettina Fliegel and Mariah Burton Nelson I am so thrilled to see that one of the National Center for Creative Aging's members (Arts & Minds) is being mentioned on this thread. There are a lot of artists delivering / creating arts programs for older adults with various stages of memory loss with their caregivers. However, the National Center for Creative Aging recognized that not a lot these programs were not accessible to folks in their home so we created the Creative Caregiving Guide an online platform that gives the caregiver access to a variety of person-centered care activities/videos to do with their care-partner. The one thing we don't have is a platform to share their creativity with each other.