I've decided I want to go to grad school when I graduate to widowhood. I had to write a "theological reflection" for the grad school to which I'm applying.
IS DEMENTIA EVIL?
A theological reflection by Karen “Kake” Huck
Submitted as part of the application for the MATS at VST
February 17, 2021
A question often asked in the Facebook forums for family dementia-carers is, “Why would God allow this evil?” In the spousal-carers forum to which I belong, people tell familiar stories about a once sweet beloved who is becoming an angry stranger, the once brilliant sweetheart turning into a staring ghost. If we were to judge evil by its effects, then the claim that dementia is a great evil makes affective sense – it feels right. I will briefly argue here that dementia is far from being an evil but might instead be a spiritual invitation to social change.
But first it’s necessary to define the terms dementia, evil, and as President Clinton once notably said, “what the meaning of the word 'is' is.”[1] Taking the last question first, what I mean by “is” is an indication of an equivalency or hierarchical relationship between the material existence and experience of dementia and the nature of evil. If the “is” is understood as indicating a hierarchical relationship, then dementia would, of course, be considered an example of “natural” evil.
I should say “dementias:” for there are, by some accounts, between 80 and 100 different types of dementia.[2] And even within specific types, such as Alzheimer’s or Vascular Dementia, every patient is different. In spite of this diversity of experiences, the World Health Organization notes that the syndrome involves “deterioration of memory, thinking, behaviour and the ability to perform everyday activities.”[3] Some dementias, especially Lewy-Body. include hallucinations. All dementias are fatal. The losses and changes that occur either suddenly or infinitely slowly with dementia may create intense suffering for both the person with dementia and the carer. Because a person with dementia may develop anosognosia – the brain’s inability to know that it is sick – sooner or later they may forget that they are different than they once were. Thus, carers often feel the losses of dementia more sharply than those whose brains are dying as they are forced to take over all the tasks their partner used to perform, including finances, household care, or even child-rearing. Carers meet these existential changes often while experiencing a loss of friends and family due to the shame and continuing fear and stigmatization of dementia.[4] What caregivers wind up experiencing during the months or years of “the Long Goodbye” is labeled “dementia grief,” a mix of ambiguous and anticipatory grief that may include the usual trappings of guilt, rage, and despair.[5] Consider that there are an estimated 50 million people with dementia world-wide and that most caregiving is performed within the family home, usually by daughters or spouses.[6] The experience of dementia care is a universal and often gendered issue of unnecessary and excessive suffering.
This suffering could be labeled as a “natural evil.” According to theologian David F. Ford, ‘natural evil’ means the “pain, suffering, and death which come through diseases, natural disasters and other harmful sources.”[7] Natural evil challenges theodicy because it’s difficult to accept that God is omnipotent and omniscient while at the same time omnibenevolent. Skeptics like Michael Shermer find it impossible to combine the supposed goodness of God with the suffering that is part of the structure of the natural world.[8] The very structure of creation, with its fearsome battles for survival and evolutionary thrust, is considered by God in the Tanak as “good.”[9] What kind of a good God would create such a world? It is not my intention here to review the millennia of argumentation about theodicy. Instead I will look at my own experience as a dementia carer and try to extrapolate from it.
My years as a dementia carer have broken my heart while healing my relationship with the rest of creation. Because dementia care requires the ability to let go of what one thinks of as “normal life,” it may force the carer to develop the ability to be present to whatever reality is unfolding from moment to moment. I have grown in compassion as well as in my ability to adapt to many challenges, including that of experiencing my own identity drifting around just as my spouse’s does. Dementia carers are forced to accept that the world they inhabit is unstable, unpredictable, and undependable. Because of this, I have been forced to reach out to a greater community and to a more personal God. And in turn, my community has wanted to reach back to me and in doing so they gain a greater understanding of the losses of dementia.
On a much vaster scale, the worldwide experience of people with dementia can challenge everyone to love the Other more deeply. The movement toward the destigmatization of dementias is growing, though as the World Alzheimer’s Report notes it lags behind the Disabilities Movement by thirty years.[10] The city of Bruges even advertises itself as “the most dementia-friendly city in the world.”[11] Even though motivations for this growing movement differ, all display love for the Other as a principle, for no one is quite as “other” as the person with dementia, the familiar and sometimes beloved become strange, the recognizable dropping into the uncanny valley. The existence of dementia worldwide is inviting all those affected by it into spiritual transformation, invited almost everyone, as I have been invited, into an intense experience of compassion and agapic love. And it is Love that is our salvation.
[1] “Clinton's Grand Jury Testimony Part 4,” "from the Starr Referral" (Washington Post), accessed February 17, 2021, https://www.washingtonpost.com/wp-srv/politics/special/clinton/stories/bctest092198_4.htm.
[2] Snow, Teepa. “Teepa's Gems.” Oregon Care Partners. Lecture presented at the Teepa Snow Dementia Carer Training, July 7, 2017.
[3] "Dementia." World Health Organization, World Health Organization, 21 Sept. 2020, www.who.int/news-room/fact-sheets/detail/dementia. Accessed 17 Feb. 2021. "What is Dementia." Alzheimer's Disease and Healthy Aging, Centers for Disease Control and Prevention, 5 Apr. 2019, www.cdc.gov/aging/dementia/index.html. Accessed 17 Feb. 2021.
[4] Riva, M., Caratozzolo, S., Zanetti, M., Vicini Chilovi, B., Padovani, A. & Rozzini, L. (2012). Knowledge and attitudes about Alzheimer’s disease in the lay public: Influence of caregiving experience and other socio-demographic factors in an Italian sample. Aging Clinical and Experimental Research, 24, 509–516. doi:10.3275/8366
[5] Blandin, Kesstan, and Renee Pepin. "Dementia Grief: A Theoretical Model of a Unique Grief Experience." Demtia (London), vol. 16, no. 1, Jan. 2017. PMC, doi:10.1177/1471301215581081. Accessed 17 Feb. 2021.
[6] Mather, Mark, and Paola Scommegna. "The Demography of Dementia and Dementia Caregiving." PRB, Population Reference Brueau, 28 May 2020, www.prb.org/the-demography-of-dementia-and-dementia-caregiving/. Accessed 17 Feb. 2021.
[7] Ford, David F. Theology: A Very Short Introduction. 3rd ed., Oxford University Press, 2020, p. 70.
[8] Schermer, Michael. "Is the Reality of Evil Good Evidence Against the Christian God? Notes from a Debate on the Problem of Evil." Skeptic, vol. 24, no. 2, 2019, pp. 42-48,
[9] Genesis 1:24-25
[10] "World Alzheimer Report 2020." Alzheimer's Disease International, Alzheimer's Disease International, 21 Sept. 2020, www.alzint.org/resource/world-alzheimer-report-2020/.
[11] "What makes Bruges, Belgium the world’s most dementia-friendly city?" NBC News, NBC, 25 May 2019.
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