Tuesday, June 9, 2015

Older Adults and Programming for People with Dementia

I’ve been planning a workshop for the Alliance’s Accreditation Commission, helping them explore evaluation programs that focus on impact, and how that may translate to our field. Bill Gates’ blithely sets numeric goals for eliminating polio or reducing HIV cases. How do you quantify the benefits of engaging with art? There is a real danger that by focusing on conventional measures—what did someone learn from a visit? How have their views on a topic changed?—we may lose sight of some of the most important work museums can do. It today’s guest post, Lisa Eriksen explores how thoughtful assessment is crucial to measuring the success of programs designed to serve people with cognitive disorders, and the people who care for them.

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 last month 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 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.

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.

Meet Me at MoMA, article in the NYT
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, wellbeing, 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.

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, as with my previous post, with a call for more examples of museums programs for people with memory loss. Please weigh in to the comments section, below, and help us build a community of practice around museums serving people with dementia and their caregivers. And I look forward to commemorating Alzheimer’s and Brain Awareness Month with you throughout in June!


Mad North Northwest said...

In Seattle, the Frye Art Museum has a program targeted for people with dementia and their caregivers that sounds fantastic. I have not seen it in action, but the here:now programs focus on making art accessible without relying on short or long-term memory, but instead engaging in the moment. http://fryemuseum.org/program/here_now

Elka Weinstein said...

Hello! The Art Gallery of Ontario (Canada) has an excellent tour program for people with Alzheimer's and their caregivers called "Art in the Moment." Melissa Smith is the coordinator, and she collaborates with the Alzheimer's Society of Canada to arrange the tours. I wrote an article about it in May for the Master en Museos Program blog at University of Zaragoza (the article is in English): http://www.mastermuseos.es/en/blog/experiencias/arte-para-el-momento-un-tour-para-visitantes-con-alzheimer/
Elka Weinstein

The Alliance's Center for the Future of Museums said...

Thank you so much for sharing information about these programs, Elka and Mad North, and Elka, thank you for sharing your blog post.

Jason Ellis said...
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Mike said...

Here at the Portland Art Museum, we're piloting a multi-visit program with Alzheimer's patients and their caregivers, working with Oregon Health & Sciences University as well as the Alzheimer's Association on an evaluation of the outcomes of these museum experiences for patients and caregivers. So far, even in the pilot phase, it has been an incredible experiences for all involved. And it wouldn't be possible without our Education team member coordinating the program, Sarah Lampen, as well as several volunteer docent educators who are so passionate about serving this audience here at the Museum. Thanks for writing this post, and thanks to all who have done such great work in this area and paved the path for programs like ours.

Marjorie said...
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Marjorie said...

Lisa and Beth, Thank you for this post. I feel that there are other areas beyond direct on-site programming where museums can make contributions to this people impacted by this growing trend. First, as employers, museums could re-examine and adjust h.r. policies in regard to more generous and sympathetic family leave and flexibility for caregivers. Second, science museums especially may have an opportunity to educate caregivers and others about dementia, Alzheimer's etc and provide resources for those who need help understanding its medical and emotional dimensions and impacts. Finally, many patients and their families cannot travel to museums due to physical constraints; I have observed musicians, entertainers and art teachers who visit these homes and lead meaningful on-site programs, but in my all-too-familiar-experiences, museums ask people to visit their facilities instead of vice-versa. Some kind of traveling exhibition or object loan program could be very powerful for those locked in facilities to experience comfort and joy.

Lisa Eriksen said...

Thank you for your thoughtful comments and sharing everyone!

Mad North Northwest – yes, the Frye Art Museum has a wonderful, long-standing program for persons with memory loss (one of my students at John F. Kennedy University did her masters project on this topic and the Frye was one of her case studies). I checked out their website just now and it looks like they are enriching the program with a conference, internship, and other activities. Like many of the other successful programs I have heard of, they are working in partnership with a local university and other experts in the field of aging.

Elka – thank you for the link to your excellent blog post. It sounds like a wonderful program at the Art Gallery of Ontario. I will have to look into their program more.

Mike – thanks for sharing your work at the Portland Art Museum. Yes, the partnerships with the Alzheimer’s associations and universities are important, but dedicated staff and volunteers are oh so critical for a meaningful program. I would love to talk with you or Sarah Lampen about your work. Feel free to email me at lisaeriksen-at-mac.com.

Marjorie – YES! I am so happy you pointed out the need to go beyond programming. As a caregiver, I know the struggle of keeping up on a full-time job while managing health and other family crises. While I was fortunate to have an understanding boss and co-workers who also had parents with dementia it was still a stressful challenge. I agree this is going to be a big issue in museum HR. I love your thoughts about science museums offering resources for persons with dementia and their families. I would love to know if there are any science centers out there making this available. And, yes, it can be a challenge to serve people who cannot make it to the museum. The San Diego Museum of Photographic Arts does offer their programs at senior centers and care facilities and I think there might be others out there doing similar programming. The idea of a traveling exhibit/loan program is intriguing.

Thanks again everyone!

Anthony Bowman said...

Thank you so much for bringing this type of museum service to light! My museum, the McLean County Museum of History in Bloomington, IL, provides "Senior Reminiscence" programming for area seniors, including those with dementia. We have offered these services officially for 10 years now, though there were earlier versions dating back to the 1980s. We perform these programs in senior centers and bring authentic objects from our education collection and enlarged, reproduction photographs from our permanent collection in order to spark conversation and memory about their life experiences. We would love to hear more about your findings, how we can better connect with our senior audiences, and perhaps how we can train other organizations to lead these programs in their own communities.

Jennifer Todd said...

At the Indianapolis Museum of Art, we offer Meet Me at IMA, a touring program for persons with early-stage Alzheimer's and dementia and their caregivers. In addition we offer a quarterly companion program, Make Me at IMA, which includes an art-making component. Our program is a partnership with the Alzheimer's Association, which received funding from a family foundation to underwrite the training which we provided to our docents. Staff or volunteers from AA screen our participants, take reservations and are present on site on the days of our tours. Educators from MoMA provided our on-site training. Though MoMA no longer offers on-site training, they have wonderful video training modules that are available on their website, http://www.moma.org/meetme/practice/index. I would recommend them as a starting point to any museum that is considering starting a program or who wants to help their staff learn more about interacting with visitors with Alzheimer's or dementia. Anecdotally, we had one participant who lives with her daughter and younger grandchildren, who were having increasing difficulty finding ways to interact. After attending Meet Me at IMA, she began drawing each day and her grandchildren are excited to come home from school to interact with their grandma about her art. Our caregivers find the gatherings to be a positive bonding experience with each other.
Many thanks for opening this conversation!
Jennifer Todd
Manager of Docent Programs, Indianapolis Museum of Art

muse said...

Having co-initiated a program for adults with memory loss at an art museum in New York, and seen evidence of a successful experience for the participants and their care partners, I can say with conviction that museums are in a unique and special position to engage this and other communities with disabilities in unconventional ways like multi sensory engagement, or multi-modal learning. In any case, through observation of several different programs serving the same audiences, I found that active engagement is essential to ensuring a positive and comfortable environment, one where everyone feels and is encouraged to respond in whatever way they can. Not only do multi-sensory experiences help to build connections for people with memory loss, this method of teaching gives general visitors a "way in" to learning about and engaging with the works of art in the galleries.

If art museums are to keep current, attract new younger audiences, and remain relevant in the larger conversation about Education, they should seriously consider this idea. Since, as human beings, we all experience the world through some or all of our senses, why should our experience of and with art be any different? Giving the visitor, whether she/he has any disabilities or not, different ways of accessing the art is being inclusive, welcoming of diverse audiences, and encouraging dialogue beyond the museum walls.

Lisa Eriksen said...

Anthony – thank you for you comment. It is good to learn that you have been providing such programming for seniors for such a long time. I’d be interested to learn how you developed and improved your program over time. It is interesting to note how some programs are only on-site (which is a challenge for many seniors) and some, like yours, go out to where the seniors are. I would love to talk with you about your program. You can contact me at lisaeriksen-at-mac.com. Keep up the good work!

Jennifer – thanks for mentioning the Meet Me at MOMA video training modules and other resources on their website! I know so many programs have been supported by MOMA’s past training efforts and are using their model, which is so well crafted. And thank you for sharing such a moving story about one of your program participants and the power of art viewing and art making in improving lives. I think these are the moments that make all the struggles of our museum work worthwhile!

muse – thank you for your thoughtful comments on engagement and multi-modal learning. I completely agree on the importance of including multi-sensory experiences in programming and throughout the museum. After observing a number of tours, I see that even with the most engaging tour guide some people can become disengaged (even fall asleep:-). Occupying multiple senses is so important – I am surprised we do not see employ it more often, but I believe there is a trend developing. Perhaps this is yet another instance where we realize that techniques developed to address the needs of a special audience benefit all visitors.

Thanks again to everyone for your sharing and comments!