Absolute Personhood in Those with Dementia


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GUJHS. 2012 July; Vol. 6, No. 2.

Jennifer Hammer

Department of Psychology, Georgetown University, Washington, DC

I remember my grandfather as a disease more than as a person.  When I was nine, he moved in with family after recently being diagnosed with Alzheimer’s disease, in my father’s anticipation of his inevitable inability to care for himself.  Soon, my original naïve enthusiasm for the ‘exciting’ change sobered into annoyance.  As his disease progressed, my attitude ultimately progressed to complete emotional detachment from his suffering and utter humiliation at his situation.  As difficult as it is for me to admit, my perception of my grandfather went from a noble patriarch, filled with anecdotes both humorous and vivaciously triumphant, to creature – volatile, infantile, and even disgusting.  My reflection of his illness only changed years later; it became one where Alzheimer’s disease (AD) robbed him of his golden years by indiscriminately hijacking his mental functions.  I now know, however, that he lived on, probably suffering more from his granddaughter’s shame than the atrophy of his brain.

Though only some of us have firsthand experience seeing someone become a “nonperson”, the practice of placing people in an awkward, liminal area between person and thing is rampant. All too often we encounter someone with some mental disability or illness, and pre-judge him or her.  Few of us would stop to reflect on where the tipping point for ‘non-person’ lies.  More philosophically put, we would rarely pause to consider some irreducible necessary and sufficient criteria for ‘personhood.’  Some such criteria may come from what Stephen Post (1998) has referred to as our “hypercognitive culture,” one where people view certain lists of mental functions and come to view those lacking in them as nonpersons (Sabat, 2001).

Quinton (1973) has proposed one model that fits this description.  He listed five immaterial psychological entities as necessary and sufficient properties for ‘person’: consciousness (of self), rationality, agency, morality, and the capacity to form and hold relationships.  In so doing, he and others that follow him have taken the unique combination of infinite skills, emotions, and traits that any one unique person may possess in a specific combination and reduced them to an umbrella list of distinguishing criteria describing the average ‘person.’ These criteria are both empirically indeterminable and ethically irksome.  By establishing criteria by which to exclude a human from the realm of personhood, we have designed and iced a slippery slope.

We can see the dangers of this by examining the implications of one particular criterion.  Bioethicist Dan Brock writes that to be a person, one must be able to establish links across time.  Due to the “destruction of memory,” such links between present and past experiences are broken, and so too is the person (Warner, 1997, p. 91).  I bet Dan Brock would disqualify my grandfather from the club, then.  You see, my grandfather called me by the name of his own daughter, “Susan.”  One could say that he had “forgotten” his daughter’s age and appearance, and perhaps even his granddaughter’s very existence.  Since he could not explicitly and accurately acknowledge the identity of a cherished loved one, he could not establish a link across time, per se.  Ironically, I took the simple utterance “Susan” to mean directly the opposite, that my grandfather was unquestionably still a person.  Susan, his daughter, had severed ties with her parents due to unresolved childhood emotional turmoil of which I am not fully aware.  For him, then, I too was a “Susan;” he was implicitly linking the agonizing memory of rejection from his daughter to a desperate hope to connect with his progressively-more-rejecting granddaughter. That one word, as I would later come to realize, showed me unequivocally that he still experienced emotional pain, as he re-experienced the loss of his fatherhood in the form of the loss of his grandfatherhood.

Few would disagree that it is morally problematic to describe personhood in a classically scientific way, yet many who are exposed to loved ones with dementia, like myself, nonetheless unintentionally treat these persons in various degrees as nonpersons.  Does this work as a self-fulfilling prophecy? Is it possible that by denoting someone a nonperson, we have the power to act in such a way so as to make a person a nonperson?  Martin Buber (1922) wrote that, “to be a person is to be addressed as Thou” (as cited in Kitwood, 1997, p. 10).  He meant that there are two ways of relating to another being: as an ‘It’ or as a ‘Thou.’  There is no fundamental distinction between an ‘Its’ and ‘Thous’ in themselves; whether a being is one or another is wholly determined by the way that being is related to by others.  For Buber, to be a ‘Thou’ is to be related to with the openness and vulnerability a complex or close relationships; whereas to be an ‘It’ is to be related to only in a detached and banal way.  The relationship between ‘Thous,’ for Buber, is the source and sustenance of personhood (Kitwood, 1997).  There is certainly an element of truth to this claim, for just as the body deprived of food will deteriorate, so too will the person deprived of adequate recognition of his personhood wither.  Rom Harré theorized that one aspect of selfhood involves socially constructed personae in relationships (Sabat, 2001).  This means that without me engaging my grandfather as ‘Grandpa,’ I took away his ability to be one.

Our subconscious reactions are potent forces, and if not aligned in a way that does not injure the afflicted person’s delicate sense of dignity and preserve relationships, can actually serve to inspire the same sort of negative thinking in the mind of the afflicted person himself.  This is what happened to Leva Zazetsky, a Russian soldier who suffered a gunshot wound to the left occipito-parietal region of his brain in 1942 (Luria, 1972).  He feared that others saw him as “good for nothing…incapable of…anything at all.”  This perception, probably founded in his social reality, had psychologically devastating effects.  Just sentences after writing this, he continued to explain that he was “killed” in his accident, and was now no longer “a man but a shadow, some creature” (Luria, 1972, p. 12).  I diagnose the situation differently: he was wounded first by a gunshot wound, and later by the lost or diminished respect he received as a person.  However, no matter how many people designate someone as ‘It,’ the ‘Thou’ will never disappear.  Zazetksy, now determined and not despondent, wrote, “I have just as much hope as ever of doing something with my life,” (Luria, 1972, p. 13).   While a social theory of personhood has a great degree of truth and valuable practical applications, it still makes personhood contingent, and that should rightly be a scary thought to us all.

Personhood must be a fundamental presupposition, and not a reasoned conclusion.  This is both morally sensible and clinically relevant.  Kitwood regarded the “dementing process” as a “dialectical interplay between neurological impairment and malignant social psychology” (1997, p. 51).  In other words, there are both physiological and social causes in the decline in cognitive function in persons with AD.  The social causes – Kitwood’s “malignant social psychology” –  are usually a result of behaviors, such as ignoring, mocking, isolating, or refusing to meet a person with dementia’s needs – that result from a lack of understanding of the absolute personhood of the afflicted person (Kitwood, 1997).  He was instrumental in developing a ‘person-centered care’ for persons with dementia that focused on avoiding malignant social behaviors that disregarded personhood (1997), an approach that Sabat developed both theoretically and empirically (2001).  Kelly (2010) found that elements of Kitwood’s malignant social psychology are still very much present in psycho-geriatric wards in the United Kingdom, but suggested that training occupational therapists to recognize aspects of residents’ selfhood could improve this situation. Edvardsson, Fetherstonhaugh, and Nay (2010) interviewed staff working in aged care, persons with early onset dementia, and caregivers of persons with dementia.  They found that “knowing the person; welcoming family; providing meaningful activities; being in a personalised environment; and experiencing flexibility and continuity” all had positive influences on the person afflicted (p. 2611).  This line of thinking in dementia care has been growing, but must continue to gain momentum in order to avoid the negative consequences of depersonalizing afflicted persons.

So how can the problem of personhood be solved?  Part of the solution involves simply observing the afflicted without biases.  It is ironic, but poignantly true, that in order to nourish and enhance the richness of one’s belief in absolute personhood, one must continually and humbly search for affirming examples of its preservation and expression in those persons who undergo neural degeneration.  In other words, the one belief that must be a presupposition for those caring for those with dementia needs to be supported with experience.  Oliver Sacks could not have phrased it more perfectly: “Constantly my patients drive me to question, and constantly my questions drive me to patients” (1970, p. vii).  Those with dementia are subjected to a reduction in the worst possible sense, robbed slowly of a multitude of cognitive functions, and only through observing the reduction they undergo can one enrich his belief even more that a person cannot be reduced into a series of traits or abilities.  This is knowledge that a medical model cannot explain; it can be gleaned only through first-hand qualitative gerontology.

The concept of absolute personhood may seem to not correlate well with a psychology whose goal is to understand and describe the mental and behavioral traits of humans; to say that a person cannot be defined, even by a single trait, seems apparently to go against everything for which the field stands.  However, as long as its descriptions of human behaviors, emotions, and thoughts never amount to definitions of what it is to be a person, its endeavor remains noble.  Cognitive disorders are one of the arenas that bring humans closest to the moral catastrophe of doing just that.  This is a tendency that is, unfortunately, embedded in human emotion and not cognition, and one that needs to be eradicated.  I fell victim to my own childhood repulsions with my grandfather and lost an opportunity to come to this vital understanding while I still had time left with him.  Nonetheless, my failing him has shaped my conviction in absolute personhood today, and even though I can never thank him, he has been a great teacher and my greatest hero.

 

References

Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2010). Promoting a continuation of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 19, 2611–2618.

Kelly, F. (2010). Recognising and supporting self in dementia: a new way to facilitate a person-centred approach to dementia care. Ageing & Society, 30, 103-124.

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Glasgow, Scotland: Bell & Bain Ltd.

Luria, A. R. (1972). The man with a shattered world: The history of a brain wound. Cambridge, MA: Harvard UP.

Sabat, S.R. (2001). The experience of Alzheimer’s disease: Life through a tangled veil. Malden, MA: Blackwell Publishers Ltd.

Warner, R. (1997). Locke, Brock, personhood and its consequences in justice for the severely demented elderly. Macalester Journal of Philosophy, 7, 91-96.

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