A Good Death: Towards Alternative Dementia Personhoods

By Melissa Liu

Melissa is a Medical Anthropology PhD student at the U. of Washington, Seattle. Her nascent research circles the intersection of neuroscience, dementia, and design. Melissa is also a Neuroethics Fellow with the Center for Sensorimotor Neural Engineering, an NSF ERC.  

Something is amiss. Why is there a neighborhood of houses within this assisted living facility? Why do all the houses in the neighborhood have the same 1950s design? Am I standing on carpet? It looks like a garden path. The ceiling feels like a sunset in real time. [1] Where am I? When is this? The questions above are inspired by Lantern, one of several memory care facilities in Ohio based on a patent-pending memory care program created by Jean Makesh where rehabilitation is the goal [2] [3]. However, many more models around the world are based on Reminiscence therapy, a type of therapy which technically has “[no] single definition” but generally “[involves] the recalling of early life events and interaction between individuals” [4]. Research shows that “Reminiscence therapy is used extensively in dementia care and evidence shows when used effectively it helps individuals retain a sense of self-worth, identity and individuality” [4].

Reminiscence therapy serves as the foundation of many types of dementia village (DV) iterations. DV and similarly designed places are based on various models of caregiving and therapies. DV are memory care communities designed with the goal of caring for residents with dementia who live in their personal memories. The communities are designed to provide spaces for a high degree of reminiscence that allows freedom for residents to live their realities.

Image courtesy of Wikimedia

DVs are being designed and built around the world. The San Diego Opera House is currently building Glenner Town Square, a “faux city...that will be like stepping into a time warp.” Located in a warehouse, the “fully functional...self-contained city center” that is a day care center for individuals with dementia [5]. Georgian Bay, an assisted living facility in Canada, includes a 1947 Dodge and visits from Elvis impersonators [6] [7]. In Denmark's Museum in Aarhus exists an exhibit called the “House of Memories” open selectively to people with Alzheimer's. The exhibit is a house that includes both 1950s architectural design and the unique focus on sensorial details. As visitors are led through the house, the actor/museum guide playing the housewife will open a can of coffee specifically chosen for its smell of popular coffee brands in the 1950s. The exhibit is based on research on the “reminiscence bump” that proposes that the “best preserved...memories [are] from a person's teens and 20s” [8]. Reminiscence-based spaces for those with dementia hold a lineage spanning back to 2009 when the groundbreaking DV Hogeweyk was created [9].

Hogeweyk is known for being the first dementia village. Located in Weesp, a suburb of Amsterdam, Hogeweyk is completely enclosed except for one camouflaged door. The village includes twenty-three houses for merely 152 residents [10]— all with severe dementia. The residents are cared for by 250 staff members providing twenty-four-hour care. After experiencing their parents’ dementia, Hogeweyk’s founders collaborated with Dementia Village Architects to design the village. Research shows that relative to living in a biomedical facility, Hogeweyk residents require less medication, have fewer behavioral issues, and report greater quality of life [10]. As written in a Gizmodo article, Hogeweyk is designed for residents to feel “normal” and still “participate in life, the same way they did before they entered a dementia care unit” [9].

Seven general lifestyle apartments are chosen for residents based on how they lived most their lives. For example, a person who lived in a high socioeconomic bracket may be placed in the “upper class” lifestyle apartment. Other apartment types include “homey,” “Christian,” “artisan,” Indonesian,” and “cultural” [10]. It is unclear who chooses and what criteria are used for selecting an apartment lifestyle for a resident.

Image courtesy of Wikimedia

Besides theoretically suffusing residents’ individual lives into apartment designs, the rest of the village is designed as any small town might be. Hogeweyk includes such fixtures as a cafe, a grocery store, a salon, a theater, and gardens. The caregivers play dual roles by working in their medical capacities but also playing the roles of village employees (e.g., gardener, hairstylist). Residents live their lives as they desire: strolling where they please, tending to their hair at the salon, purchasing food. While manicuring the lawn, gardeners can also keep a medical caregiver’s eye on the residents. Hogeweyk caters to the reality (or what he sees as the reality) of individuals with severe dementia.

In comparison, strict adherence to biomedical models of general eldercare have led to many in the United States dying in sterile hospital beds [11]. Scientific research leads to financially costly life-sustaining treatments that lack consideration for a patient’s quality of life (e.g., dialysis) [11]. Models based on valuing length of life over quality of life contributes to a carelessness for the patient or, in non-biomedical terms, human beings who deserve to be thought of as such. Residents of retirement homes that spend most of their daily lives confined to the residential premises might feel a loss of control and freedom. Biomedical models of eldercare may better be used in tandem with design knowledge, which may change both the way practices of the ‘care’ of healthcare and the patient are conceptualized. If medical research points to patients feeling a lack of freedom in residential facilities, implementing long walkways (cf. Hogeweyk) where residents experience greater space would bolster the humanity and value of a resident whose desires and quality of life are seriously considered and respected.

In the case of Alzheimer’s disease, Hogeweyk moves towards recreating a good life as a way for residents to experience a good death. By searching neither for a cure nor a cause, Hogeweyk focuses on creating an ontology that both fulfills the desires of individuals with dementia as much as possible (e.g., watching a play in a theater) and creates comfort and ease for basic skills (e.g. walkways are color coded to help create ease for residents to stay on a path). Rather than treating residents with dementia as patients with symptoms, Hogeweyk holds of prime importance the dignity and personhood of its residents. Respecting the reality of residents informs the facility’s design.

Image courtesy of Flikr

A widely repeated critique in news articles is that Hogeweyk is lying to its residents and fabricating reality for a vulnerable population [12][13]. The village takes reminiscence therapy to the extreme where the past is the present. Even articles casting Hogeweyk in a positive light describe the village as “a more benevolent version of ‘The Truman Show’” [14]. In the article “On Recognition, Caring, and Dementia,” Dr. Janelle Taylor, a medical anthropologist at the University of Washington, Seattle, argues for an alternative configuration of care experientially learned by caring for her mother who has dementia, Taylor writes that “[those] who have little firsthand experience with dementia tend, I think, to imagine it as a more or less purely cognitive loss of a store of remembered facts, manifested in a loss of the ability to recite names and dates and other bit of information” [15]. After being repeatedly asked if her mother remembers her name, Taylor writes that “I don't need my mother to tell me my name...I already know these things” [15]. Rather, the question that should be asked is “Do we grant her recognition?” [15].

These villages are attempting to cater to a growing market of aging Baby Boomers. Hogeweyk's construction cost of over $25 million was primarily government-funded [16]. The resident pays around $6,000 a month. The Netherlands, where Hogeweyk is located, consistently ranks first on measurements of best healthcare systems. Citizens have mandatory government-funded healthcare insurance [17]. With privatized healthcare in the United States, at what cost to residents would the building of a DV be profitable? What kind of care would be provided to those who cannot afford to live in a DV?

The question turns to sustainable models of care for individuals with dementia. Organizations are looking at changing conceptions of age and how communities are configured. Judson, a not-for-profit organization in Ohio, creates intergenerational apartment buildings [18] [19]. Similarly, the Dutch have Humanitas Independent Senior Living Facility that provides free student housing for students who will be paired with an elderly person for a roommate [20][21]. Each student is required to spend at least thirty hours “helping out” their roommates and neighbors [19]. As an institutional affiliate with the World Health Organization, the AARP has a program for Age-Friendly Communities that certifies cities actively creating shifts in eight particular “Domains of Livability” (e.g., housing, social participation, community support) [22]. With the increasing number of people who will be diagnosed with dementia, there is an urgent call to imagine, design, and move towards a future where communities shift towards a different models to care for the aging whether that truly addresses the needs and dignity of the aging. Whether the best model is DMs or something like satisfying new criteria for Domains of Livability or both remains to be seen.

Acknowledgment 

Thank you to Karen Rommelfanger for her generous help and guidance.



References 



 1. Porter, Evan. “One man turned nursing home design on its head when he created this stunning facility.” Upworthy, September 8, 2016. Accessed September 23, 2016. http://www.upworthy.com/one-man-turned-nursing-home-design-on-its-head-when-he-created-this-stunning-facility?g=2&c=ufb1.



2. Makesh, Jean. “PodCast 5 – Seven Building blocks for new learning.” YouTube video, 7:55. Posted April 6, 2015. https://www.youtube.com/watch?v=rDsdigYD-4g.



3. “Svayus – ‘Memories of yesterday to function today ™’.” Svayus. Accessed September 23, 2016. http://svayus.com/.



4. Dempsey, Laura, et al. “Reminiscence in dementia: A concept analysis.” Dementia 13(2014):176-192.



5. Lewis, Danny. “Fake Towns Could Help People With Alzheimer’s Live Happier Lives: Model towns meant to spark memories could help patients with dementia.” Smithsonian, September 21, 2016. Accessed September 23, 2016. http://www.smithsonianmag.com/smart-news/fake-towns-could-help-people-alzheimers-live-happier-lives-180960518/?utm_source=facebook.com&no-ist.



6. McLaughlin, Tracy. “Retirement home turns back the clock for dementia patients.” Toronto Sun, May 17, 2015. Accessed September 23, 2016. http://www.torontosun.com/2015/05/17/retirement-home-turns-back-the-clock-for-dementia-patients.



7. The National. “Home Recreates Past for Dementia Patients.” YouTube video, 6:52. Posted October 11, 2015. https://www.youtube.com/watch?v=9rOYmxIWzJI.



8. Overgaard, Sidsel. “Denmark’s ‘House of Memories’ Creates 1950s For Alzheimer’s Patients.” NPR, September 13, 2016. Accessed September 23, 2016. http://www.npr.org/sections/parallels/2016/09/13/493744351/denmarks-house-of-memories-recreates-1950s-for-alzheimers-patients?utm_source=npr_newsletter&utm_medium=email&utm_content=20160918&utm_campaign=npr_email_a_friend&utm_term=storyshare.



9. Campbell-Dollaghan, Kelsey. “An Amazing Village Designed Just For People With Dementia.” Gizmodo, February 20, 2014. Accessed September 23, 2016. http://gizmodo.com/inside-an-amazing-village-designed-just-for-people-with-1526062373



10. “Hogeweyk, living in lifestyles. A mirror image of recognizable lifestyles in our society.” Hogeweyk. Accessed September 23, 2016. http://hogeweyk.dementiavillage.com/en/.



11. Kaufman, Sharon. Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. North Carolina: Duke University Press, 2015.



12. Sagan, Aleksandra. “Canada’s version of Hogewey dementia village recreates ‘normal’ life: Canadian facility creates similar false-reality experience based on Holland’s Hogewey.” CBC News, May 3, 2015. Accessed September 23, 2016. http://www.cbc.ca/news/health/canada-s-version-of-hogewey-dementia-village-recreates-normal-life-1.3001258.



13. Napoletan, Ann. “ Dementia Care: What in the World is a Dementia Village?” Alzheimer’s.net, August 7, 2013. Accessed September 23, 2016. http://www.alzheimers.net/2013-08-07/dementia-village/.



14. Planos, Josh. “The Dutch Village Where Everyone Has Dementia: The town of Hogeway, outside Amsterdam, is a Truman Show-style nursing home.” The Atlantic, November 14, 2014. Accessed September 23, 2016. http://www.theatlantic.com/health/archive/2014/11/the-dutch-village-where-everyone-has-dementia/382195/.



15. Taylor, Janelle. “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly 22(2008):313-335.



16. Tagliabue, John. “Taking On Dementia With the Experiences of Normal Life.” The New York Times, April 24, 2012. Accessed September 23, 2016. http://www.nytimes.com/2012/04/25/world/europe/netherlands-hogewey-offers-normal-life-to-dementia-patients.html?_r=0.



17. “Zorgrek.; uitgaven (lopende, constant prijzen, financiering, 1998-2013.” Centraal Bureau voor de Statistiek, May 21, 2015. Accessed September 23, 2016. http://statline.cbs.nl/StatWeb/publication/?DM=SLNL&PA=71914ned&D1=37-43&D2=a&HDR=G1&STB=T&VW=T.



18. “About Us.” Judson. Accessed September 23, 2016. http://www.judsonsmartliving.org/about/.



19. Hansman, Heather. “College Students are Living Rent-Free in a Cleveland Retirement Home: Research shows that the unique arrangement could have health benefits for the elderly.” Smithsonian, October 16, 2015. Accessed September 23, 2016. http://www.smithsonianmag.com/innovation/college-students-are-living-rent-free-in-cleveland-retirement-home-180956930/.



20. Regnier, Victor. Design for Assisted Living: Guidelines for Housing the Physically and Mentally Frail. Wiley: 2002.



21. Reed, Carey. “Dutch nursing home offers rent-free housing to students.” PBS, April 5, 2015. Accessed September 23, 2016. http://www.pbs.org/newshour/rundown/dutch-retirement-home-offers-rent-free-housing-students-one-condition/.



22. “The 8 Domains of Livability: An Introduction.” AARP. Accessed September 23, 2016. http://www.aarp.org/livable-communities/network-age-friendly-communities/info-2016/8-domains-of-livability-introduction.html.

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Liu, M. (2016). A Good Death: Towards Alternative Dementia Personhoods. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/10/a-good-death-towards-alternative.html