Dementia, Palliative Care and Your Local Museum

By Lee Burnside M.D., M.B.A. and Mary Jane Knecht B.A.

For centuries museums have held a sacred place in human culture.  They are the cornerstone for documenting and preserving human culture and artistic expression, and sharing those works with the world. In the US alone there are over 17 thousand museums with over 850 million museum visits a year.

 “Just being in the museum, surrounded by art, has an impact in and of itself.”                                                                                                                   —Care partner

But museums are much more than a sterile repository of objects and artistic expressions.  They have cultural roles in artistic interpretation, education, community outreach, and activism. These roles are now not only the norm, but the new standard of excellence for our 21st century museums.

So is it too far a leap to think our 21st century uber museums could touch the world of dementia care? This is most certainly the case for programs catering to persons living with dementia and their families.

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Frye Art Museum here:now gallery tour. Photo Credit: Jill Hardy

As our population ages and mortality improves in cancers and chronic disease states, dementia is becoming a larger component of hospice and palliative care caseloads. Currently one in six deaths in the US is attributable to dementia and in our state of Washington one in three.

Planning for the impact of Alzheimer’s and related dementias in Washington State is a daunting endeavor. No other disease process has such broad impact on our lives, spanning from deeply personal effects in our lives to the collective to large scale economic impacts to our society.  Unfortunately, with no prevention, treatment or cure anticipated for the near future, dementia will undoubtedly play an increasingly large role in shaping the framework of our society.

To combat the incredible impact of Alzheimer’s and dementia, The Alzheimer’s Disease Working Group came up with seven major goals in a state plan for Washington, along with associated strategies and recommendations to support those living with the disease now and plan for the future.

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Frye Art Museum here:now participant. Photo Credit: Lou Daprile

Dementia is a disease for which we have no prevention, treatment, or cure. It’s long tail of decline can distract us from its terminal nature and the need to address anticipatory grief and bereavement. There is also a focus on the immediate physical needs of the person with dementia, often at the expense of their relationship with family and friends: relationships, personhood, even personal growth for both the person with dementia and their care partners, take a back seat to the more immediate caregiving needs.

The State Plan astutely identified the need for a stigma free community in which persons with dementia and their care partners, can not only feel welcome and supported, but also continue to engage in society to the fullest extent possible.  Such engagement can provide direct support to the person with dementia, but can also provide a “joint respite”, where the person with dementia and the care partner (such as a family member or even a paid professional) can take a break from the patient/caregiver routine and be daughter, spouse or friend again; in essence, to be able to maximize their presence in the community they live.

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Frye Art Museum here:now gallery tour. Photo Credit: Katherine Lamar

Fortunately, there has been a great deal of growth in community programs and events geared especially for persons with dementia and their care partners. Alzheimer’s cafes, music events, walks, museum programs and musical theater programs have been increasing in number. These programs have been developed and promoted in great part due to grass roots efforts headed by deeply dedicated individuals. Their growth and expansion is not only a reflection of the dedication of those supporting the programs, but of the dire need for a dementia-embracing environment.

We can see the direct impact of these programs in our communities. The Frye Art Museum in Seattle, WA established its here:now arts engagement program for persons living with dementia and their care partners in 2010. Led by specially trained museum educators and teaching artists, here:now programs celebrate present-moment awareness and new possibilities of creative expression. Two free programs are offered for small groups of adults living with dementia and their care partners:  a monthly discussion-based gallery tour of contemporary and historical works of art, and a six-week class that includes a gallery tour, with a joint studio art-making experience, and social time.

 We were having fun and making a collage, we were in the same moment together. It didn’t matter what you could remember and what you couldn’t, at that time, we’re just having fun.               Care partner 

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Frye Art Museum here:now art class. Photo Credit: Katherine Lamar

The programs are fun and enjoyable, but is there even more benefit? Enjoyment in and of itself is not to be discounted in the all too often tedious world of dementia, Such programs have benefits to the partnership between individuals with dementia and their caregiver. Enjoyment and socialization are fairly universal experiences, as well as respite; respite not just for the care partner but respite from the caregiving relationship with more normalization of previous relationship roles.

These programs, successful as they are, are just a start.  Communities not only need innovators to spark new programs for persons with dementia, but to support on a local and state, and national level. We need to extend these benefits into the broader community (nursing facilities, private homes, etc.) and reach different cultural and ethnic populations. Dementia is an issue not just for the medical world to tackle but also for entire communities to address.  The intersection between arts and medicine in palliative care needs to be understood, supported and utilized to the best of our ability. We are well into the 21st century.  I have no doubt that there are significant advances coming in the treatment not only of Alzheimer’s but of all the various types of dementia.  I also believe that it is imperative that as communities, large and small, our advances in how we embrace those affected by dementia be just as great.

Attend a Town Hall event in your community to learn more about the Washington State Plan to Address Alzheimer’s and Other Dementias.

Quotes used with permission from here:now program participants, Frye Art Museum, Seattle, WA.

Lee Burnside, MD, MBA, is Clinical Assistant Professor in the Department of Medicine, Division of Geriatrics and Gerontology at the University of Washington.

Mary Jane Knecht BA is Manager of Creative Aging Programs at the Frye Art Museum (Seattle, WA).

References

Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. http://www.alz.org/facts/overview.asp

Burnside, L. Knecht, MJ. Hopley, E. Logsdon, R: Impact of an Experiential Art Program on Persons with Dementia and their Care-partners. Dementia. Published online March 2015, doi: 10.1177/1471301215577220

American Alliance of Museums. (2013). Museums on call: How museums are addressing health issues. Retrieved from http://www.aam-us.org/docs/default-source/advocacy/museums-on-call.pdf?sfvrsn=8

National Public Radio. A History of Museums, ‘The Memory of Mankind’. November 2008. http://www.npr.org/templates/story/story.php?storyId=973771

 

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