Older Adults & Programming for People with Dementia

Written by Lisa Eriksen, museums and non-profit consultant

Reposted from Center for the Future of Museums (CFM) blog, courtesy of Lisa Eriksen and Elizabeth Merritt.  Check out more musings on the future of museums at the CFM blog.

It seems that there is a month to commemorate or celebrate every group, food, and ailment. In May, Jewish-Americans, Haitians, and teen CEOs are acknowledged. Eggs, hamburgers, salsa, and salads are also honored in May. And a multitude of illnesses, such as ALS, Antiphospholipid Antibody Syndrome, and arthritis (just the diseases beginning with “A”), are brought to public attention.

May is also Older Americans Month, and this past May President Obama, in his proclamation (it is worth a read) acknowledged this truth about our future:

“The United States is entering a new era, and the face of our Nation is growing older and more diverse. For the next 15 years, thousands of Americans will reach retirement age every day, and by 2030, there will be more than twice as many older Americans as there were at the beginning of this century.”

I find it strange—and rather distressing—that both the Older Americans Month proclamation and the 2015 White House Conference on Aging (designed to recognize the importance of Medicare, Medicaid, and Social Security, as well as to look ahead to the issues of older Americans in the next decade) do not mention addressing the increasing prevalence of Alzheimer’s disease. A year ago, I blogged about the coming dementia epidemic, why museums should take note, and some of the model programs museums are developing to serve this growing audience.

The Alzheimer’s Association estimates that 5.3 million Americans have the disease in 2015 (an increase of 100,000 since my last post) and this will rise by 40% in the next ten years to 7.1 million. By 2050, the number of people with dementia is projected to hit 13.8 million and will cost the US over $1.1 trillion (in 2015 dollars). This dramatic rise includes a five-fold increase in government spending under Medicare and Medicaid and a nearly five-fold increase in out-of pocket spending.

I see these increasing numbers reflected in my own personal experience. As my family’s “dementia journey” continues, I have observed how many other friends and museum colleagues have joined me on this path. Even Jeb Bush recently acknowledged his mother-in-law has Alzheimer’s.

Thankfully, I am also seeing an increase in the number of museums developing programs and services for people with memory loss. This past year, in partnership with the regional Alzheimer’s Association, the Oakland Museum of California began a new tour program for persons with early-stage Alzheimer’s and their care partners. The OMCA program is supported in their efforts by Rebecca Bradley, Manager of Access Programs at the Museum of Fine Arts San Francisco, where they also offer special memory loss tours. I was honored to observe tours at both institutions and have had fascinating conversations about strategy and method with their staff and the dedicated docents.

Source: ArtNews. Photo by: Jason Brownrigg
Source: ArtNews. Photo by: Jason Brownrigg

One of the main challenges we struggle with as museum practitioners is shifting our focus from learning to engagement. We are trained to emphasize structured learning, fact retention, and imparting new knowledge to our visitors. Yet this is often not the appropriate approach for visitors with dementia. Persons with memory loss and their loved-ones value comfortable, engaging, and joyful experiences outside of daily routines. Through these special programs, museums can provide unique opportunities for people to have meaningful experiences and activities, and to socialize with new people, and their care partners and families.

The Museum of Photographic Arts, in San Diego, CA offers two notable programming initiatives for people with memory loss, and what I find most interesting is their approach to both engagement and assessment. The first program, Seniors Exploring Photography, Identity and Appreciation (SEPIA) promotes “art-based dialog and opportunities to create photographic images.” While it is designed for all seniors, MOPA has adapted the program for people with cognitive impairments, who make up about a quarter of the program’s audience, according to MOPA Lifespan Learning Coordinator Kevin Linde. The program is not too technical, offers choices, and provides experiences not focused on the participants’ memory loss.

The second MOPA offering is in partnership with the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego, and three other museums in Balboa Park. The Memories at the Museum program, modeled after the Museum of Modern Art’s Meet Me at MoMA, focuses on conversation and interaction while engaging with art. Participants with mild-to-moderate Alzheimer’s can stimulate their verbal and visual abilities by discussing artwork in a comforting environment with their care partner.

So how do we know we are successful in our programs for people with memory loss? As I mentioned, assessing “learning outcomes,” as they are usually identified by museum educators, is not really helpful or appropriate for people with memory loss. Instead, MOPA focuses on measuring participant engagement, health, well-being, and positive feelings.

For instance, in March, MOPA piloted a four-week album-making course, My Life Through the Lens, based on the SEPIA program with the Shiley-Marcos Research Center. They blended together evaluative tools from the SEPIA program and those developed by Shiley-Marcos. A program evaluation survey posed multiple-choice plus open-ended questions and program participants could self identify as a caregiver or person with memory loss. Questions such as “what effect did the program have on your mood?” and “what effect did the program have on your relationship with your family member or friend?” helped MOPA understand the affective impact of the program. Kevin shared the survey results with me and I was pleased to learn that a number of participants felt the program had helped to increase their feelings of togetherness, closeness, and strengthening relationship bonds between the person with memory loss and the care partner.

Meet Me at MoMA, article in the NYT: http://nyti.ms/1GIaE0j
Meet Me at MoMA, article in the NYT: http://nyti.ms/1GIaE0j

I find it particularly exciting that the affective benchmarks developed for MOPA’s memory loss programs are being incorporated into the museum’s assessment of programs for all visitors. When I asked Kevin about this, he shared that the programs for seniors inspired MOPA to take a look at what works across the board in the museum and focus on the overall visitor experience.

What if all museums measured their success by visitor engagement, happiness, and health in addition specific learning outcomes? Kevin says that MOPA continues to focus on improving its evaluation and understanding the impact of the programs beyond the one or two hours when the visitor is at the museum. It is critically important to include the caregiver in both the programming and the evaluation. While working with other museums is helpful, partnering with social service organizations and non-traditional partners (such the Alzheimer’s Association and local universities) is also vitally important to serving growing older adult audiences with memory challenges.

Whether memory–challenged or not, the growing population of older adults will be looking for more meaningful and dynamic experiences within museums, and museum professionals must be ready to adapt programming and experiences for this new generation of elders. An aging population presents museums with both challenges (of retention, financial support, and access) and opportunities (for lifelong learning, enhancing health and well-being).

So I will end with a call for more examples of museums programs for people with memory loss. Please weigh in and help us build a community of practice around museums serving people with dementia and their caregivers. And please  celebrate Alzheimer’s and Brain Awareness Month each June!

Selected Programs

In the comments section associated with Lisa’s CFM blog post, people shared a few programs at art museums that reach individuals with dementia and their caregivers.  Here are some of them, with links to more information (if available):

Frye Art Museum“here:now”

Art Gallery of Ontario“Art in the Moment”

Portland Art Museum — “artNOW” (pilot program)

Indianapolis Museum of Art“Meet Me at the IMA”

*     *     *     *     *

Header Photo: “Art Museum” by astrid westvang, Flickr.com, CC BY-NC-ND 2.0

11 thoughts on “Older Adults & Programming for People with Dementia”

    1. Hi Josh,
      Thanks for sharing about the Dallas Museum of Art’s Meaningful Moments program. I see that you do art making as part of the program. I know that some programs here in the Bay Area are working on including that in their offerings. Let me know if you are attending the LEAD conference next month. It would be great to meet in person and learn more about your access programs.

  1. Great article and I am especially keen to develop a community of practice.
    We are two years into running facilitated conversation tours for people living with dementia and their carers. The programme runs in partnership between Alzheimers Auckland and the Auckland Art Gallery (http://www.aucklandartgallery.com/learn/community-groups/gallery-programmes), and has been immensely rewarding for all involved.
    As well as the discussion-based tours (inspired by MeetMe at MOMA) we also deliver monthly art-making workshops, which have been really well-received.
    We have just also piloted a training programme for a small number our Gallery Assistants and Volunteer Guides, and they are now assisting in the delivery of these tours so that we can build capacity and open the tours up to the general public in the future.
    I am really keen to explore some of the shorter term projects mentioned in this article, as well as the methods for evaluation. Looking forward to more comments!

    1. Hi Andrea,
      Sounds like you are doing wonderful programs in Auckland! I am especially excited to see you are committed to building your staff and volunteer capacity in this area. All museum staff (and volunteers) will be interacting with persons with memory loss (whether they know it or not) so providing appropriate hospitality will only help our museums serve the public. I am happy to chat with you about the programs I have examined in more detail – feel free to email me at lisaeriksen – at – mac.com. Thanks for sharing!

  2. Thanks for your article, Lisa! At the Nasher Museum of Art at Duke University, we offer “Look & Lunch” tours for visitors with Alzheimer’s and their caregivers as part of our larger “Reflections” program. The timing of your article is perfect as we are expanding our tours this month and also building in more evaluation.
    You can find more information on our website – http://nasher.duke.edu/community/#reflections.
    I also recommend this short documentary done by Kati Henderson, a Duke student, about two of the families in our program – https://vimeo.com/132229831.
    Please come visit us if you find yourself in NC!

    1. Thanks so much for sharing your programs. It seems that the most successful programs have the partnership/support of university or medical organizations focused on aging/dementia. Your video is wonderful and shows the complexity of living with this disease (I am getting ready to go home to visit my father tomorrow and I got rather weepy watching it). I love how the people shared that your program helps make them feel “normal,” which is so important as the illness begins to become all-consuming. I plan on adding a section to my website to all of the fantastic program offerings in museums, and would love to include your work and video. Let me know if you are attending the LEAD conference next month. It would be great to meet in person and learn more about your access programs. Please feel free to email me at lisaeriksen – at – mac.com.

    1. Thanks for the information, Jean! Looks like wonderful programs and I am pleased to learn about so many museums providing these opportunities. Working with the local Alzheimer’s Assocation is often a key driver of success.

  3. Hello, Thanks for this great post. I run the SPARK! program at the John Michael Kohler Arts Center and we do so many things with my group of people that I don’t think other institutions are able to do: last week we made linocut prints, next month we’re cooking soup, and later in the fall we’re going to be ballroom dancing and attending a performance. My main focus during the program is to make sure they have fun and that they create a moment with their caregiver or with one of our volunteers. Learning is just a bonus! My thought is that if they keep having a good time, they’ll keep coming back and benefit from engaging in arts making activities and participating in a supportive community. The SPARK! program is part of a consortium of institutions that provide creative engagement for people with memory loss… see the links below for more information:

    http://www.jmkac.org/index.php/spark
    https://www.facebook.com/SPARKAlliance?fref=ts

    1. Hi Jen,
      Thanks so much for sharing about your work! I know about the SPARK! program as a fantastic collaboration and model – one my my students looked at SPARK! as a case study for her Masters thesis and I attended a session on the program at AAM? a number of years ago. I had lost track of what was going on with SPARK! so thanks for the links. It sounds like you are doing lots of really fun and engaging activities! Will you be at the LEAD conference this week in DC? If so let me know – lisaeriksen-at-mac.com – and we can meet for a chat. I always love talking to folks about their programs, so let me know if you have time for a phone conversation. Thanks again and keep up the good work!

      1. Hi Lisa, Thanks for your kind words. I wish I was going to the conference, but our budget is so tight that they eliminated all conferences and travel! I’ll send you some more information and we should definitely have a chat! The consortium has grown so much since our session at AAM and I bet you’ll love to hear what other places are doing too!

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