Getting Out While the Getting's Good

By Dena Davis

Dr. Davis is currently at Lehigh University. She taught at Cleveland-Marshall College of Law (Cleveland State University) and Central Michigan University. She received her doctorate in religion from the University of Iowa and her J.D. from University of Virginia. Her specialty is bioethics, and her specific focus is on the ethics of genetic medicine and genetic research. Dr. Davis’ latest book is Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures (2nd Edition, University of Oxford Press, 2010). Dr. Davis has been a Fulbright scholar in India, Italy, Israel, Indonesia, and Sweden. Dr. Davis serves on the Central Institutional Review Board of the National Cancer Institute, and is a member of the NIH Embryonic Stem Cell Eligibility Working Group.

A number of times in the last two years I have been invited to speak about Alzheimer’s disease (AD). The venues have all been academic, but nonetheless have differed widely: South Carolina and New York City; bioethicists; physicians; undergraduates; hospital staff. I always begin by inviting people to participate in a thought experiment. I tell them that I am going to describe two people and then ask them which of the two they would prefer to be. (These people are actually my parents, but I don’t tell them that.) I first describe “M,” who remains cognitively intact and lives independently until his death from an aneurysm at 87. Then I describe “F,” who died at 99, after a ten year decline into Alzheimer’s disease. (I usually give a few details, such as when F was no longer able to live independently, when she became incontinent, when she no longer recognized family and friends.)



At this point, I hold my breath. I am about to ask my audience to choose whether they would prefer to be M or F, but the rest of my presentation relies on the assumption that most people will choose M. What if they don’t? At a recent conference in South Carolina, I almost funked it, made nervous by my own stereotypes about the South, and also because the previous speaker had given a heart-warming presentation of elderly people with dementia responding to music and clowns. At Emory University, my talk was preceded by a tremendously appealing presentation from a gentleman with a family history of Alzheimer’s. He spoke movingly of his aunt’s life and death with the disease; dare I suggest that most of us would prefer to die before we become symptomatic?

A portrait of a man with dementia.

(Image courtesy of Pixabay.)

However, despite the different venues, the response is always the same: virtually everyone in the room would prefer to die suddenly than to live a decade longer but with dementia. I know that there is a big gap between preferring to die before dementia, and taking that death into one’s own hands. Nonetheless, I know that I am not the only person who plans to “get out while the getting’s good,” and to attempt to end my life before dementia robs me of the ability to act. 

Achieving this goal, however, requires overcoming some daunting obstacles. One of the most difficult is how to find what I call the sweet spot, between not ending one’s life too early and missing out on some good years, and not missing the window of opportunity by putting it off too late and sliding into dementia. There are conflicting accounts of whether one is still able to make and carry out a plan while in the early stages of dementia, but that is a risk I am not willing to take. We do know that two of the earliest signs of dementia are loss of executive function, and lack of awareness of one’s own disability. In other words, one may be unaware of one’s increasing dementia, and unable to make a plan and carry it through. Here are two vignettes from the beginning years of my mother’s life with dementia, when she was still living independently, driving, paying bills, and legally capacitated:

My mother returns from an outing with another elderly woman. “I feel so sorry for Angela! She doesn’t know what’s what. She keeps repeating the same question over and over again. It’s very irritating.” My mother exhibits no awareness that she herself asks the same questions over and over again. 

My mother decides to get a cat. She mentions this to me and my brother, in fact she mentions it every time in our almost daily phone conversations. “Great idea, Mom, you should definitely get a cat. You know where the animal shelter is. Get a friend to go with you.” Next day, next week, next month, “I am going to get a cat.” Finally, I asked my son, on his next visit to his grandmother, to take the initiative to go with her to get a cat. They did and brought back Raven, who was a great success. My mother had a reasonable wish to do an easy and appropriate thing, well within her capacities, but there was a disconnect between her wish and her ability to act on it, almost like pushing down on the gas pedal and discovering that the cable has been cut. 

Image courtesy of Flickr.

Although my mother had spoken often during her life of her intention to commit suicide rather than live with dementia, she had missed the window of opportunity and had left it too late. But what would have been the right time? My mother did not begin to experience dementia until she was nearly 90, so had she arbitrarily decided to end her life at 85 (a point at which half of all Americans have some form of dementia) she would have lost some good years.



Where is the sweet spot?



This problem is brilliantly portrayed in Lisa Genova’s best-selling novel, Still Alice.¹ Alice is a successful academic, at the top of her game, when she is diagnosed with early onset AD. She knows that research and teaching will soon be beyond her, but she is hoping for a few more years of enjoying her family and the mundane pleasures of an ice cream cone or a walk in the park. On the other hand, she is protective of her dignity and is determined not to end her life with a protracted decline into dementia. She crafts a strategy in which she programs her smartphone to buzz her every week with a simple quiz; when she is no longer able to respond appropriately to questions about the date or the names of her daughters, she will be directed to open a folder on her computer in which she has left a letter, written by Alice now to her later, demented self. However, Alice fails to realize when she begins to fail the quiz, and eventually she leaves the phone in the freezer, which ruins it. But one day, aimlessly clicking through files on her computer, she finds the letter she had written to her later self. The letter opens with words of love and reassurance, and then directs Alice to go upstairs to her bedroom, find a bottle at the back of her nightstand drawer marked “Alice,” and to take all the pills in the bottle with a big glass of water, get into bed, and go to sleep. The letter warns Alice not to discuss this with anyone—just do it. Alice wants to comply, but as she walks up the stairs to her bedroom, she forgets her purpose. She goes downstairs again to read the letter, remembers her purpose, but forgets again as she climbs the stairs. She wishes she could print out the letter to bring it with her, but no longer remembers how to work the printer. Eventually, she is distracted by her husband’s voice, and forgets the whole thing.

Image courtesy of Wikimedia Commons.

Although I doubt we will ever see a perfect solution to the “sweet spot” problem, the last decade has seen progress in a number of areas that can help individuals assess their background risk for Alzheimer’s, and the immanence of its approach. First, it is now possible to use direct-to-consumer genetic testing, such as 23andMe, to test oneself for an important genetic variable that influences one’s risk of getting Alzheimer’s: APOE.  Although even having two APOE4 variants does not doom one to the disease, it substantially raises the likelihood. Those who inherit one copy of the e4 form have a three-fold higher risk of developing AD than those without the e4 form, while those who inherit two copies of the e4 form have an 8- to 12-fold higher risk.² People who have themselves tested and discovered a higher than average risk might wish to take further steps to monitor for any signs of the disease. Intriguingly, Alzheimer’s is now seen as a “3-stage disease,” of which the first stage occurs even before symptoms develop, perhaps decades before.³ It is increasingly possible to identify those people for whom the disease process has begun, but before they are symptomatic. Even better, it might be possible to track the disease progression, so as to end one’s life as close as possible to the last “good” moment.



Current efforts to diagnose AD in the presymptomatic stage are driven by two scientific goals. First, finding the disease at the earliest possible stage identifies appropriate patients for treatments that could slow or perhaps even reverse the course of the disease. This is crucial, because there is general consensus that the reason there are no effective medications for Alzheimer’s is that by the time the disease produces symptoms, it is way too late. Second, presymptomatic diagnosis is a crucial building block in medical research that seeks to find and test those at high risk for the disease.



Presymptomatic testing runs a gamut that includes neuroimaging to track volume loss and cerebral blood flow in the brain, concentrations of amyloid in the cerebral spinal fluid, PET scans, blood tests, and noninvasive tests of episodic memory.⁴ Other possibilities include motion sensors and “smart carpets” that diagnose impending dementia from changes in gait.⁵ These monitoring systems are part of a general movement to use technological surveillance to aid people in aging “successfully” at home, but there is no reason why a savvy and determined person could not make use of them to direct information only to herself.

Image courtesy of Wikimedia Commons.

The degree of certainty one needs to act is, obviously, a matter for each individual to decide. Each of us has a different balance of how we weigh more years of life against the value of not becoming demented. People have been making these kinds of judgments for years, usually in the face of uncertainty. Women, for decades, have been asked to weigh the risk of having a child with Down Syndrome, against the risk of losing a pregnancy through amniocentesis. People with cancer balance the possible benefits of various treatments (many of them experimental) against the possibility of side effects that can include cardiac damage and even secondary cancers. This is no different. Death is irreversible, but so is dementia. And once one has started down the dementia road, it is too late to turn back.





References

1. Lisa Genova. Still Alice (New York: Pocket Books, 2009).

2. Alzheimer’s Association. In Brief for Professionals. My Mother Has Alzheimer’s Disease: Am I Next? https://www.alz.org/health-care-professionals/documents/InBrief_GeneticLink.pdf Accessed August 9, 2017.

3. US Food and Drug Administration, Guidance for Industry: Alzheimer’s Disease: Developing Drugs for the Treatment of Early-Stage Disease: Draft Guidance (for comment purposes only), February 2013. http://www.fda.gov/downloads/Drugs/ GuidanceComplianceRegulatoryInformation/Guidances/UCM338287.pdf (accessed 10 August 2017).

4. Dena S Davis,“Alzheimer disease and pre-emptive suicide,” Journal of Medical Ethics 2014;40:543-549.

5. Pam Belluck, “Footprints to Cognitive Decline and Alzheimer’s Are Seen in Gait,” New York Times 16 July 2012.

Want to cite this post?

Davis, D. (2017). Getting Out While the Getting's Good. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/09/getting-out-while-gettings-good.html

The Politics of Elder Care, Social Care, and the “Dementia Tax”: A View from the United Kingdom

By Richard Ashcroft

Professor Richard Ashcroft, an AJOB Neuroscience Editorial Board member, teaches medical law and ethics at both the undergraduate and postgraduate level in the Department of Law at Queen Mary University of London.

The United Kingdom has recently gone through a General Election. The main reason the election was called by Prime Minister Theresa May was to secure a stronger mandate for the ruling Conservative Party, which was governing with a small overall majority of 19 seats over the Opposition parties. PM May’s argument was that in the negotiations with the other member states of the European Union over the UK’s exit from that Union (Brexit), an increased majority would give her a stronger bargaining position. As the election turned out, the electorate returned the Conservatives with fewer seats, and PM May had to form a minority administration, with a partial agreement to support the Conservative Party made with one of the smaller parties, the Democratic Unionist Party, which only contests seats in Northern Ireland. As a result PM May has a working majority, but one that is more fragile, rather than stronger.

Commentators have suggested a number of reasons for this outcome, but there seems to be general agreement that a turning point in the electoral campaign was the release of the election manifesto of the Conservative Party. While there are many reasons that might explain the downturn in support for PM May, one particular policy announced in the manifesto, deemed the “dementia tax,” attracted widespread criticism. 

UK population distribution.

Image courtesy of Wikimedia Commons.

The manifesto identified five key challenges for the UK, and policies to address these. One of the five is “The Ageing Society.” (The other four were: a need for a strong economy; Brexit and a changing world; enduring social divisions; and fast-changing technology). The ageing society is addressed in chapter 4 of the manifesto, which notes that “our system of elderly care is not working for the hundreds of thousands currently not getting the dignified and careful attention they deserve, nor for the people and organisations providing that care, nor is it sustainable for today’s younger people who will potentially face care costs themselves. It is not fair that the quality of care you receive and how much you pay for it depends in large part on where you live and whether you own your own home.” (p.64) 

This is a good summary, I think, of the consensus that has formed over the past few years about the nature of the financial problem facing social care in the UK. To understand the practical context for this, it is important to note that in the UK health and social care are separate systems. Whereas healthcare is financed (by and large) by the state centrally, mainly through publicly owned and managed providers (together referred to as the NHS), social care is, for the most part, delivered privately, with costs partly or wholly offset by funding through local government, subject to means testing and a variety of user charges. In some cases, a patient or service-user will get some care free, because it is delivered by and through the NHS; whereas another patient or service-user might get exactly the same type of care, but have to pay for it because it is delivered through the social care system. Some care is delivered in the patient or service-user’s own home (domiciliary care) and some is delivered through residential social care and some again is delivered in hospitals. While any changes in the finance or delivery or quality of health care quickly become headline news in the mass media, similar changes in social care rarely attract the same attention. A useful history of why we have this complex situation, which can fairly be described as a mess, is Nick Timmins’s The Five Giants: A Biography of the Welfare State (London: Harper Collins, 2001 [2nd edition]). 

Returning to finance, the Conservative manifesto says:

“Under the current system, care costs deplete an individual’s assets, including in some cases the family home, down to £23,250 or less. These costs can be catastrophic for those with modest or medium wealth. One purpose of long-term saving is to cover needs in old age; those who can should rightly contribute to their care from savings and accumulated wealth, rather than expecting current and future taxpayers to carry the cost on their behalf. Moreover, many older people have built considerable property assets due to rising property prices. Reconciling these competing pressures fairly and in a sustainable way has challenged many governments of the past.” (p.65) 

Image courtesy of Flickr user Myfuture.com.

Again, this is an apt diagnosis. Some elderly service-users are able to finance their care from income; typically these are the most wealthy, in particular those with high investment income or high occupational pensions. Others, whose income may be less, may be able to finance their care out of savings. A significant proportion, however, hold neither high paying occupational pensions nor hold significant savings, and their largest single capital asset is their homes. 

What the Conservative Party proposed was:

“First, we will align the future basis for means-testing for domiciliary care with that for residential care, so that people are looked after in the place that is best for them. This will mean that the value of the family home will be taken into account along with other assets and income, including value in the family home.   

“Second, to ensure this is fair, we will introduce a single capital floor, set at £100,000, more than four times the current means test threshold. This will ensure that, no matter how large the cost of care turns out to be, people will always retain at least £100,000 of their savings and assets, including value in the family home. 

“Third, we will extend the current freedom to defer payments for residential care to those receiving care at home, so no-one will have to sell their home in their lifetime to pay for care.” (p.65)

It was this financial proposal that received widespread criticism in much of the news media, from commentators on the political Right as well as in the Centre and on the Left. Many commentators focused on the shift from previous policy, which set a cap on how much an individual would have to pay before the state stepped on (as announced on p.65 in the Conservative Party’s manifesto for the 2015 General Election, following the recommendations of Sir Andrew Dilnot in his report to the then Conservative-Liberal Democrat coalition administration in July 2011). The proposal in the 2017 manifesto proposes a floor. The 2015 manifesto proposed that no one should pay more than a certain amount – undefined, but often quoted as being about £72 000. 

So if you held assets of say £500,000, you would be left, at death, with assets of about £428,000. Under the 2017 manifesto, you would pay out until you had £100,000 left. And while in the 2015 commitment your house would, under most circumstances, be ring-fenced from assessment, in 2017 it would not. This is a very significant difference, at least on paper. 

Image courtesy of Flickr user

American Advisors Group.

Other commentators highlighted the way bringing the home into the means test was unacceptable for other reasons: both because it is important to many families to be able to pass on the family home from parents to children, and because of the above noted point that the home is often the joint home of a couple or family, not simply the asset of the person needing care to be disposed of (even after their death in deferred settlement of care costs). 

The proposal quickly became labelled the “dementia tax.” This highlighted another politically contentious problem, and one of particular interest to the readers of this blog: crudely put – if you are dying over a period of some years of cancer, then all your care is funded by the NHS, with some services provided by charities which typically do not charge patients. Most palliative care is also free. 

Some domiciliary care may also be provided, which may attract charges, but family carers can get welfare benefits and other support. In other words, cancer is treated as an illness and is fully under the health service umbrella, provided free at the point of use and funded through general taxation (and to some extent through charitable giving). On the other hand, if you are dying of Alzheimer’s or Parkinson’s disease, although your medical care will be supervised through the NHS, in general you are treated as needing social care, and this you have to pay for up to the point where you pass through the means-test threshold. 

Thus, disorders such as Parkinson’s and the dementias are not treated as health conditions but as social needs. 

Image courtesy of Wikimedia Commons.

And moreover, in the current state of medical knowledge, neither is preventable or even predictable; thus, there is no obvious reason why this distinction should be drawn where it is, or why one should attract high costs payable by the patient and his or her family and the other does not. 

In the aftermath of the highly critical reception of this proposal, PM May was reported to have announced that there would, after all, be a limit on how much people were going to have to pay. 

After the election, when the new administration was finally formed and its legislative platform was announced to Parliament in the traditional Queen’s Speech, the social care had been dropped. 

The other main parties had also considered social care in their manifestos. The Labour Party proposed to “lay the foundations for a National Care Service” (p.72), although much of the detail on financing was to be worked out through “consensus on a cross-party basis about how it should be funded.” The Liberal Democratic Party also announced general reforms, in particular the implementation of a cap on social care costs to patients, but focussing mainly on structural reforms, and without much detail on financing. And the Scottish National Party, which went into the General Election as the third largest party in Parliament, committed to continuing “free personal care for older people” (which as the governing party in the Scottish Parliament it is able to control following Scottish devolution in 1999) but made no commitment on residential care, (p.5). 

What can we learn about social care from this short tour through our recent general election? First of all, we learn that it is a high risk political issue, which three of the four main parties handled, as it were, with asbestos gloves, and the fourth party, which entered the election expecting to win handsomely, decided to make a central part of its platform. It then discovered that unless carefully thought through and consulted upon, social care could be a political issue which, far from being a minority issue, could turn an election campaign sour very quickly. No one had predicted, when the election was called, that social care would turn out to be one of the key defining issues. What should perhaps have alerted politicians to its importance is the well known findings that older people are more likely to vote and that older people are more likely to vote Conservative. These data from polling company YouGov give the picture. 

Image courtesy of Wikimedia Commons.

Social care financing is a complex issue, and the technical details are not generally well known. Policy debates about social care financing rarely get into the mainstream media. And, to be frank, even philosophers and economists find debates about intergenerational equity… difficult. That said, it is not immediately obvious that older voters are unreasonable in their demands or would necessarily disagree with the solidarity argument laid out in the Conservative manifesto. Their resistance to the specific proposals would likely involve a complex narrative involving the emotional and family importance of their homes, their fear of dementia, concern with the quality of social care provision, concern for their legacy to their children, and so on— which does not pick out a clear policy path to follow. 

And yet, as the Conservative manifesto makes clear, “the ageing society” is one of the defining political and ethical challenges of our era. 

The status quo is riddled with incoherence and injustice, which everyone acknowledges, and to this extent the Conservative Party deserves a degree of non-partisan applause for seeking, however unsuccessfully, to lay this before the electorate. 

A concluding challenge, then, for ethicists: this episode should make it strikingly clear that we should be playing our part to clarify the social and health policy challenges of ageing, and perhaps especially those challenges associated with the currently hardly treatable, unpreventable and unpredictable diseases of brain and mind, and to work with economists and public policy scholars to devise ethically sound options. Inevitably there will be political debate about which path to go down. But political debate is imperative here; political silence cannot be allowed to resume.

Want to cite this post?



Ashcroft, R. (2017). The Politics of Elder Care, Social Care, and the “Dementia Tax”: A View from the United Kingdom. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/08/the-politics-of-elder-care-social-care.html

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.

Want to cite this post?



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

Should Presidential Candidates Be Required to Undergo Preclinical Alzheimer’s Disease Testing?

By Kaitlyn B. Lee

Kaitlyn “Kai” Lee is a Project Coordinator in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She helps to investigate the ethical, legal, and social issues of integrating whole genome sequencing into clinical care as part of MedSeq, a project funded by the NIH’s Clinical Sequencing Exploratory Research (CSER) program. Kai earned her BA in Neuroscience from Middlebury College and hopes to continue her education through a joint JD/MPH program.

In her op-ed published in the Houston Chronicle, “Presidential candidates should be tested for Alzheimer’s,” radio and television personality turned author and keynote speaker Dayna Steele advocates testing presidential candidates for Alzheimer’s disease and releasing their results to the voting public. Steele believes voters have a right to know their future president’s Alzheimer’s test results, as she maintains, “I want to know that the candidate I choose not only supports my priorities but is also of sound mind – a mind that will last through four or eight years” (Steele, 2016). Drawing upon her own personal experience with her mother’s Alzheimer’s disease, Steele describes the progression of her mother’s disease from simply forgetting things, to driving while lost, to total mental and physical incapacitation. Steele cites her mother’s rapid 3-year decline to assert that an affected person in a position with as much power as the President would be devastating for the country, arguing that we can avoid such a “catastrophe” by insisting candidates be tested for Alzheimer’s disease and disclose those results to the public.

Presumably, Steele is particularly concerned about testing presidential candidates for Alzheimer’s disease because Alzheimer’s is a progressive neurodegenerative disease that slowly degrades memory, intellectual abilities, and eventually, physical abilities. Alzheimer’s is the most common form of dementia, a catchall term for deterioration of cognitive ability that is severe enough to affect one’s daily life. Because Alzheimer’s is a chronic neurodegenerative disease, symptoms worsen over time. A 2015 report released by the Alzheimer’s Association describes the current understanding of the symptoms and progression of Alzheimer’s disease. In the early stages of the disease, a person can manage independently but may have some trouble planning and organizing and may suffer minor memory lapses, such as forgetting words or misplacing valuable objects. As the disease worsens, individuals exhibit memory loss of significant people or events, confusion with time or place, and personality changes. Finally, as the disease becomes more severe, physical abilities, such as walking, talking and eating deteriorate, and the person will require full-time assistance to perform basic functions until eventual death (“2015 Alzheimer’s disease facts and figures,” 2015). The rate of disease progression differs between individuals, but typically, a person will live 3 to 10 years after clinical symptoms begin (Zanetti et al., 2009).

Neurodegeneration in Alzheimer's Disease,

image courtesy of Wikipedia

Although Steele does not specify in her recommendation what type of testing she believes to be appropriate, someday it may be possible to reliably predict whether an individual will develop Alzheimer’s. During the preclinical stage of Alzheimer’s disease, biomarkers, a general term for biological indicators of disease, begin to present themselves in the body years or even decades before clinical symptoms manifest (Villemagne et al., 2013). Using magnetic resonance imaging (MRI), positron emission tomography (PET), and analysis of specific protein levels (e.g. amyloid beta) in cerebrospinal fluid (CSF), preliminary scientific evidence suggests that biomarkers can be measured to predict an individual’s likelihood of later developing Alzheimer’s, even when he or she may be at present asymptomatic (Cavedo et al., 2014; Langbaum et al., 2013). Although there are no current diagnostic criteria that doctors can use to accurately diagnose Alzheimer’s in a preclinical stage, research is underway to determine standardized biomarker cut-off values and to optimize techniques for CSF assays, PET, and MRI (Sperling et al., 2011). If that possibility is realized, according to Steele’s recommendation, candidates could be required to undergo screenings for Alzheimer’s biomarkers to predict whether they will develop symptoms in the coming years or decades. In this post, I will be discussing testing for Alzheimer’s disease as it relates to predictive preclinical testing for Alzheimer’s biomarkers.

Arguably, Steele’s concerns about testing for Alzheimer’s disease may be more relevant in the upcoming election than ever before, as several candidates in this election have risk factors for Alzheimer’s disease. Age is the biggest risk factor for Alzheimer’s disease, with average risk for a 65-year-old estimated around 10.5% (Sperling et al., 2011). Beyond 65, one’s risk doubles every 5 years, meaning that a 70-year-old has twice the risk of a 65-year-old (Brookmeyer et al., 2011). Three candidates, Donald Trump, Hillary Clinton, and Bernie Sanders, would be over 70 during their term. Bernie Sanders would be the oldest president in U.S. history, ending his term at age 79. In addition, family history is another risk factor for Alzheimer’s. Even if one does not carry the APOE4 gene, an individual has a two- to four- fold risk of getting Alzheimer’s if a first-degree relative has been affected (Fisher Center for Alzheimer’s Research Foundation, 2016). Donald Trump’s father, Fred Trump, suffered from Alzheimer’s for six years before his death in 1999 (Rozhon, 1999). Also, there is some evidence that previous head injury is a risk factor for Alzheimer’s disease, as history of moderate traumatic brain injury (TBI) increases risk by 2.3-fold (Plassman et al., 2000). Hillary Clinton suffered a concussion after falling in December 2012, and although the concussion did not appear to have any lingering effects, it still may put her at higher risk for developing Alzheimer’s later in life (Good, 2014). Given that several candidates in this upcoming election may be at increased risk for developing Alzheimer’s disease, the question of whether or not to test candidates is highly relevant.

Donald Trump, Hillary Clinton,

and Bernie Sanders; images

courtesy of  Flickr user

Michael Vadon and

Whizzers's Place

Despite the fact that a number of candidates in this upcoming election may be at increased risk for Alzheimer’s disease, upon closer examination of the respective rights of presidential candidates and the voting public, requiring candidates to undergo testing is problematic. Although Steele believes that the public has a right to know their candidates’ Alzheimer’s test results, the public’s right to know is not enough to outweigh individual candidates’ 4th amendment right to protection against unreasonable government searches and right to medical privacy. The idea of a public’s right to know information about the health of candidates arises from the philosophy that citizens have the right to be governed only with their consent, and that consent is only meaningful when citizens are making informed decisions (Streiffer et al., 2006). Voters consider health to be a key factor in determining a president’s ability to lead, as suggested by results of a 2004 CNN/Gallup poll cited by Brown (2008), in which 96% of those polled felt that the president’s general health was important or very important to being a good president. Especially given that developing Alzheimer’s disease would severely affect a future president’s ability to lead, the case for the public’s right to know candidates’ Alzheimer’s preclinical test results is compelling.

However, voters’ right to know is in conflict with candidates’ 4th amendment right and right to medical privacy. This conflict is a point of divide among voters; although the CNN/Gallup poll found that almost all of those polled believe it is important to have a healthy president, they have mixed responses about how the health of the president should be ensured. The majority of those polled (61%) believed that the president should retain the same rights as citizens to a private medical record, while a substantial minority (38%) advocated for releasing all health information that might affect the president’s ability to lead (Brown, 2008). I believe that candidates’ 4th amendment rights and rights to medical privacy override voters’ right to know, even when the information may affect a future president’s ability to lead, as in the case of preclinical Alzheimer’s testing.

Under the 4th amendment, people are guaranteed that the “right to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures [by the government], shall not be violated, and no warrants shall issue, but upon probable cause” (US Const., amend. IV). Assuming that candidates are entitled to these rights, the question is, would requiring preclinical Alzheimer’s testing be considered an “unreasonable” search for an ostensibly healthy candidate (Brown, 2008)? I would say so. Testing for Alzheimer’s disease is a psychologically distressing process that has potentially harmful and life-changing consequences, especially given that it is a terminal illness with no treatment at this time (Karlawish, 2011). Receiving an Alzheimer’s diagnosis has been shown to result in shock, fear, anxiety, and depression (Husband, 1999; Husband, 2000; Pratt & Wilkinson, 2003). Because candidates are not yet elected, there is a possibility that they will have to resume their normal lives after the election, and they should not have to bear the life-altering consequences that accompany a terminal diagnosis as a result of their run for presidency. Thus, even if a presidential contender has one or more risk factors for Alzheimer’s disease, an increased risk is not enough to justify the potential psychological distress that may accompany the testing process or preclinical diagnosis. Furthermore, because family history is a risk factor for Alzheimer’s disease, candidates’ family members may also get unwanted and unwarranted risk information, which can in turn cause psychological distress. Clearly, preclinical Alzheimer’s disease testing is an “unreasonable search” that can cause harm not only to candidates but also their family members, and thus, government mandated testing would be in violation of the 4th amendment.

US Constitution, image courtesy of Flickr user Lou Gold

Candidates also have a right not to disclose their Alzheimer’s results. If a candidate voluntarily opted to undergo preclinical Alzheimer’s testing, he or she should have a right to keep that information private. Currently, there are no laws that require the president or presidential candidates to reveal anything at all about their health, as they are covered under the Health Insurance Portability and Accountability Act (HIPAA), which allows patients to control privacy over their health information (U.S. Department of Health & Human Services, 2016). Notably, HIPAA makes some allowances for disclosures in situations where 3rd parties are at risk, such as patients with an infectious disease or patients who express a desire to harm themselves or others. Given this reasoning, one could make the argument that because Alzheimer’s disease could affect a future president’s ability to lead, the public is at risk; however, disclosing candidates’ preclinical Alzheimer’s test results would likely do more harm than good, and ultimately, the public is not at risk due to sufficient federal safeguards in place. Even if a candidate does have preclinical biomarkers for Alzheimer’s disease, he or she may still not develop symptoms for years or even decades (Villemagne et al., 2013); getting a positive result may not even affect his or her presidency, if elected. Further, those without a scientific background may mistake a preclinical diagnosis with a current one, and because Alzheimer’s disease is a relatively stigmatizing label, candidates should not have to endure any potential stigma as a result of his or her candidacy.

Given that requiring candidates to undergo Alzheimer’s testing is unethical, could we elect a president who may develop Alzheimer’s disease during his or her term? Possibly, but I would argue that the consequences are not as dire as Steele fears, due to sufficient federal safeguards in place. For example, the President does not make decisions unilaterally, and our system of checks and balances would prevent implementation of any irrational decisions. In the end, if the President were found to be demonstrating diminished capacity, the vice president would succeed him or her under the 25th amendment. Ultimately, given the federal safeguards in place, Alzheimer’s disease is not a significant threat to the presidency, and thus, requiring candidates to be tested is both unethical and unnecessary.

References



Alzheimer’s Association. “2015 Alzheimer’s disease facts and figures.” Alzheimer’s and Dementia 11 (2015): 332-384. PubMed. Web. 20 Mar. 2016.

"Alzheimer’s Disease." Alz.org. Alzheimer's Association, n.d. Web. 14 Feb. 2016.

Arias, J. (2014). Translating Preclinical Test Results into “Real World” Consequences. The Neuroethics Blog. Retrieved on March 23, 2016, from http://www.theneuroethicsblog.com/2014/05/translating-preclinical-test-results.html.

Brown, Teneille R. “Double Helix, Double Standards: Private Matters and Public People.” Journal of Health Care Law and Policy 11.2 (2008): 295-376.

Brookmeyer, R., D.A. Evans, L. Hebert, K.M. Langa, S.G. Heeringa, B.L. Plassman, and W.A. Kukull. “National estimates of the prevalence of Alzheimer’s disease in the United States.” Alzheimer’s and Dementia 7.1 (2011): 61-73.

Cavedo E., S. Lista, Z. Khachaturian, P. Aisen, P. Amouyel, K. Herholz, C.R. Jack, Jr., R. Sperling, J. Cummings, K. Blennow, S. O’Bryant, G.B. Frisoni, A. Khachaturian, M. Kivipelto, W. Klunk, K. Broich, S. Andrieu, M. Thiebaut de Schotten, J.F. Mangin, A.A. Lammertsma, K. Johnson, S. Teipel, A. Drzezga, A. Bokde, O. Colliot, H. Bakardjian, H. Zetterberg, B. Dubois, B. Vellas, L.S. Schneider, and H. Hampel. “The road ahead to cure Alzheimer’s disease: development of biological markers and neuroimaging methods for prevention trials across all stages and target populations.” Journal of Prevention of Alzheimer’s Disease 1.3 (2014): 181-202.

Good, Chris. "Hillary Clinton: 'No Lingering Effects' From 'Serious' Concussion." ABC News. ABC

News Network, 06 June 2014. Web. 14 Mar. 2016.

"HIPAA for Professionals." HHS.gov. N.p., 10 Sept. 2015. Web. 14 Mar. 2016.

Husband, H. J. "Diagnostic Disclosure in Dementia: An Opportunity for Intervention?" Int. J. Geriat. Psychiatry International Journal of Geriatric Psychiatry 15.6 (2000): 544-47. Web. 26 Feb. 2016.

Husband, H. J. "The Psychological Consequences of Learning a Diagnosis of Dementia: Three Case Examples." Aging & Mental Health 3.2 (1999): 179-83. Web. 26 Feb. 2016.

Karlawish, Jason. “Addressing the ethical, policy, and social challenges of preclinical Alzheimer’s disease.” Neurology 77.15 (2011): 1487-1493. PubMed. Web. 23 Mar. 2016.

Langbaum, Jessica B.S., Adam S. Fleisher, Kewei Chen, Napatkamon Ayutyanont, Francisco Lopera, Yakeel T. Quiroz, Richard J. Caselli, Pierre N. Tariot, and Eric M. Reiman. “Ushering in the study and treatment of preclinical Alzheimer’s disease.” Nature Reviews Neurology 9.7(2013): 371-381. PubMed. Web. 23 Mar. 2016.

Plassman, B.L, R.J. Havlik, D.C. Steffens, M.J. Helms, T.N. Newman, D. Drosdick, C. Phillips, B.A. Gau, K.A. Welsh-Bohmer, J.R. Burke, J.M. Guralnik, and J.C. Breitner. “Documented head injury in early adulthood and risk of Alzheimer’s disease and other dementias.” Neurology 55.8 (2000): 1158-1166. PubMed. Web. 23 Mar. 2016.

Pratt, Rebekah, and Heather Wilkinson. "A Psychosocial Model of Understanding the Experience of Receiving a Diagnosis of Dementia." Dementia 2.2 (2003): 181-99. Web. 26 Feb. 2016.

Rozhon, Tracie. "Fred C. Trump, Postwar Master Builder of Housing for Middle Class, Dies at 93." The New York Times. The New York Times, 26 June 1999. Web. 10 Mar. 2016.

Sperling, R.A., P.S. Aisen, L.A. Beckett, D.A. Bennett, S. Craft, A.M. Fagan, T. Iwatsubo, C.R. Jack, Jr, J. Kaye, T.J. Montine, D.C. Park, E.M. Reiman, C.C. Rowe, E. Siemers, Y. Stern, K. Yaffe, M.C. Carrillo, B. Thies, M. Morrison-Bogorad, M.V. Wagster, and C.H. Phelps. “Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease.” Alzheimer’s and Dementia 7 (2011): 280-292.

Steele, Dayna. "Steele: Presidential Candidates Should Be Tested for Alzheimer's." Houston Chronicle. N.p., 5 Feb. 2016. Web. 14 Feb. 2016.

Streiffer, Robert, Alan Rubel, and Julie Fagan. "Medical Privacy and the Public's Right to Vote: What Presidential Candidates Should Disclose." Journal of Medicine and Philosophy J. of Med. & Philosophy NJMP 31.4 (2006): 417-39. Web. 28 Feb. 2016.

“The Constitution of the United States,” Amendment 4.

"What You Should Know About Testing for Alzheimer’s Disease – New Guidelines." Fisher Center

for Alzheimer's Research Foundation. N.p., n.d. Web. 10 Mar. 2016.

Villemagne, V.L., S. Burnham, P. Bourgeat, B. Brown, K.A. Ellis, O. Salvado, C. Szoeke, S.L. Macaulay, P. Maruff, D. Ames, C.C. Rowe, C.L. Masters, Australian Imaging Biomarkers and Lifestyle (AIBL) Research Group. “Amyloidβdeposition, neurodegeneration, and cognitive decline in sporadic Alzheimer’s disease: a prospective cohort study.” The Lancet Neurology 12.4(2013): 357-367. PubMed. Web. 20 Mar. 2016.

Zanetti, O., S.B. Solerte, and F. Cantoni. “Life expectancy in Alzheimer’s disease (AD).” Archives of Gerontology and Geriatrics 49 (2009): 237-243. PubMed. Web. 20 Mar. 2016.

Want to cite this post?

Lee, K.B. (2016). Should Presidential Candidates Be Required to Undergo Preclinical Alzheimer’s Disease Testing? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/04/should-presidential-candidates-be.html