Thursday, June 11, 2015

Throwback Thursday: the Coming Dementia Epidemic

This past Tuesday, Lisa Eriksen blogged about museum programs for people with dementia and how staff address the thorny challenge shifting focus from impact to engagement, and assessing programs that explicitly do not expect to impart new knowledge. To round out the week, here is a reprise of Lisa's post from last year that reviewed the trends driving a renewed focus on services for people with dementia. 

(Originally published on Thursday, May 1, 2014)

Several weeks ago my mother and I did what is probably the most difficult thing we will do in our lives; we placed my father, who has Alzheimer’s disease, in a residential care home. After more than six years of caregiving, my mother’s health is failing and we are both emotionally exhausted. This year I have had to forgo work and teaching opportunities (and sadly attending the AAM meeting) to assist my family. Now we are trying to adjust to the new “normal” and to process the sadness of being unable to care for my father in his home. The next path in our “dementia journey” (as we are now referring to it) will be figuring out how to pay for this long-term care without bankrupting my mother’s future. 

Having lived in the world of dementia for so long, I am occasionally surprised that a great number of my museum colleagues have little understanding of the issue—although I am finding more and more people who have a loved one with Alzheimer’s. Today, it is estimated that 5.2 million Americans have some form of dementia. In the coming years, this number will escalate rapidly as baby boomers age. Therefore, it has become my calling as a museum futurist to alert my colleagues to this fast-growing trend and discuss with them how our museums might respond and assist our communities.

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Here is what we know about the future: The number of Americans surviving into their 80s and beyond will continue to grow dramatically due to advances in medical care. And the boomers are just now reaching the age of elevated risk of dementing illness. The Alzheimer’s Association, in its most recent Facts and Figures report, states that by 2025—in just 11 years—an estimated 7 million people will have the disease. That’s a 40% increase. By 2050, this number could reach almost 14 million, barring any medical breakthroughs. With current funding levels for research the prospect of a breaksthrough does not appear likely. Women are at the center of this crisis, being more likely to have Alzheimer’s and more likely to become caregivers.

If these numbers don’t cause you to take interest, the economic impact should. It is the most expensive disease in the nation. This year the direct costs of caring for those with Alzheimer's will total an estimated $214 billion, including $150 billion in costs to Medicare and Medicaid. Nearly one in every five dollars spent by Medicare is on people with dementia. It is estimated that Alzheimer's will cost an estimated $1.2 trillion (in today's dollars) in 2050. This epidemic will put a huge strain our healthcare system and economy in the future. Will this drain financial resources from education and other civic expenditures, like museums?

People with memory loss will be visitors to your museum, whether you know it or not. They will require specific accommodation and programs. How will we respond to their needs, desires and challenges? As public institutions with a mission of community service, how do we serve this population? Fortunately, a number of institutions have committed to developing programs and services for those with memory loss. Other museums are in various stages of launching new projects. There are leaders that we can look to, like MoMA with its gold-standard program Meet Me at MoMA, the Frye Art Museum and its here:now program, and the Museum of Photographic Arts, San Diego with its SEPIA and Memories at the Museum programs.

Another approach is to form alliances for training and delivery, like the SPARK!program in Wisconsin. I believe there are new partnership opportunities and economic models to consider in developing programs and service for persons with dementia and their care providers. Last year, it was my great privilege to serve as the advisor to Raenelle J. Tauro who wrote her master’s thesis, Partnerships with Impact: Collaborations Between Museums and Health and Social Service Organizations to Serve Individuals with Alzheimer’s Disease, at John F. Kennedy University Museum Studies program. I recommend it highly to colleagues interested in the topic and in cultivating collaborative relationships.

As I continue on my personal and professional journey, I am discovering new programs and talking with museum colleagues about strategies to address this future challenge. Currently, I am interviewing presenters from a 2013 California Association for Museums conference session, “Contented Engagement: Serving Visitors with Memory Loss,” to see how their programs have, or have not, developed over the past year. My research also includes some new programs in development, partnerships between Bay Area museums and our regional Alzheimer’s Association. I look forward to reporting back on some of my discoveries in a future blog post.

If your museum is providing programs and services for people suffering from dementia, or their caregivers, please provide information & links in the comments section, below. If you have ideas for things museums could do that you don’t see being done anywhere yet, Lisa and I would love to hear those ideas as well


Rachel Ropeik said...

I'll add the Brooklyn Museum's Brooklyn Afternoons program to this list.
Brooklyn Afternoons: Art and Conversation for Individuals with Memory Loss. We invite individuals living with dementia and their caregivers to explore the collection together. Each tour is an opportunity to enjoy conversation, works of art, and each other’s company. For more information or to register for these free tours, please contact us at or (718) 501-6229. Private Brookyn Afternoons events for small groups can be arranged on request.

Lisa Eriksen said...

Thanks for sharing your program at the Brooklyn Museum, Rachel. Sounds wonderful and I would love to learn more about your approach and lessons you have learned. I'll contact you directly.

Karen Young said...

I run a charity called Sweet Readers: We train middle school students to understand the science and symptoms of AD and how best to connect with elders in need. We then bring the kids and elders together for six-session, interactive programs based in museums, elder care centers and school classrooms. We work with nursing homes, assisted living centers, adult day programs and partner with private, public, charter and special needs schools in New York and Connecticut with plans to expand to the Boston Area soon!

Lisa Eriksen said...

Karen - Sweet Readers looks like a wonderful program (just watched your video)! You can see the deep connections between the middle school students and the elders. Any plans for expanding to the West Coast? I'd love to talk with you about how you created and formed your program. My email is