Alzheimer's and Our Sense of Loss: A Very Personal Affair

By Lilian Kennedy (Editor)

The post I write today is personal. And it is about an experience that is becoming increasingly personal for a growing number of people and families, globally.  This post concerns the growing prevalence of Alzheimer's among our elderly.  I admit that this post is, in some respects, selfish - I am doing my PhD in Anthropology, about Alzheimer's, and am currently facing the start of my research fieldwork.  Therefore, this post reflects my pre-fieldwork concerns and I approach it as a think-piece on the question of the personhood of someone with Alzheimer's.  Personhood here is taken to mean that quality we possess of being a conscious, living and experiencing subject in the world. This is also however, an invitation to our (much appreciated!) readers to contemplate the ideas I present herein, and if feeling so bold, to please post your own comments, opinions and experiences below. 

While I could play into fear-mongering and recount the repeated WHO reports regarding the rising numbers of Alzheimer's diagnoses, its anticipated economic burden for various countries, or related problematic research efforts, I would instead like to use this space to move away from an overly academic or macro endeavor. I wish to engage with the subject of Alzheimers in a smaller, closer and more tender way. My bit of blog space is dedicated to the space in which most people who love a person with Alzheimer's find themselves. It is dedicated to the unique heartbreak of this disease, and what we might learn from this experience.

In a quick preface designed for brevity, Alzheimer's is a neuro-degenerative disease that strikes elderly people and is the most common form of dementia. There is no cure, and it steadily worsens until death. Its hallmark symptoms are confusion, memory loss, mood swings and trouble with language. As a person with Alzheimer's worsens, they tend to withdraw from social and family life and are often described as being ‘lost,’ ‘not there anymore,’ or ‘an empty shell’ by their family and friends (1,2,5). The grief and frustration family and friends feel at the perceived loss of their loved one is acute and complicated. Often, this grief is described as mirroring what many experience when a loved one dies, but Alzheimer's presents the bizarre situation of continued grieving for the loss of someone still physically present and living. Here, I pause to take note of the importance of such moments when we, human beings, grieve for the loss of a person.  I do this because these moments point to the fact that something we cherish is being threatened. Deeply held ideas about what matters to us surface. Contemplating the distinctive situation of a person with Alzheimer's allows us to gain a bit of insight into how we decide what makes a person and what spells their disappearance.

Social science disciplines have produced valuable and interesting work on the idea of what makes personhood. Work that has dealt with the specifics of Alzheimer's has shown that the idea of a person with Alzheimer's being ‘lost’ is tied to philosopher Decartes’ dualist approach to human existence, which he separated into mind and body (6). This idea has molded western thought about who we are, has linked personhood with our minds and is reminiscent of Socrates’ famous line, “I think, therefore I am.” The mind is seen to be housed in, and made possible by, the brain organ, which poses particular implications for Alzheimer's. As Alzhiemers is described as a disease of the brain, the validity of the mind is therefore threatened. If the correct functioning of the mind is suspect, then so too can be one’s personhood. Simply, based on the dualist approach: if the mind is lost, where is the person? Work within Anthropology has also included an investigation of a Cartesian dualism which challenges the idea that the mind is the sole house of personhood. Work on the notion of ‘embodiment’ or ‘embodied selfhood’ has located ‘the self’ and how we engage with the world as primarily residing in the body. This draws on ideas from some of Anthropology’s favourite theorists, Merleu-Ponty and Bourdieu, who both importantly showed that a person is in the world corporeally, highlighting the body as the place of experiential immediacy. This is an incredibly succinct rendering of their robust work and views, but it is important to note that in these ideas, the body is an important site of expression and interaction. Cognition does not possess sole custody over our ability to relate with the world - we are bodies in motion and the subtle, corporeal ways we are in the world is an act of communication with it. The mind matters, but the body does too.

Work on what effects the separation of mind and body has had an impact on the way we understand the experience of being in the world, and how we might judge someone else’s ‘there-ness’. It has illuminated some of the foundational notions we rest such ideas on: but it is work which still operates within the model of mind and body separation. It is also work which treats being a person who is fully ‘there’ as a something which is a project of the individual. To clarify, I mean that by separating a person’s ability to be in the world as something that is either created by the mind, the body, or both, conveys the notion that to be a person is something that is a sum of the parts of the individual.  If you only need a mind and/or a body to be a person then the whole concept of personhood is an independent one. At this point, I pause again, and take the opportunity to contemplate the call put forth by the title of our blog project: ’it ain’t necessarily so’. I propose, and this plays into my own admittedly selfish pre-fieldwork ruminations, that a person’s validity as a person, or their experience of being in the world is not an individual experience at all, but instead an incredibly social one.  Perhaps being a person individually just ain’t necessarily so, we have to be somebody to someone else to count as a person who is ‘there.’


I pull from anthropological work which suggests that what makes the experiences of being in the world meaningful for a person, is the recognition of existing as such by the people close to them. Your status as a thinking, feeling subject relies on you having relations with others (3) and sharing a kinship with people means that you share in the back-and-forth of familial life, of caring for one another. By owing things to and caring for people, and having the same done in return, a meaningful shared social life is created and you gain a position as person within it (4). This matters to the experiences of family members of loved ones with Alzheimer's because often they feel that they can no longer recognize their loved one’s part in this back-and-forth exchange.  This can lead to feeling that they no longer know what their loved one wants, or how to care for them, which can be a devastating and confusing experience. I saw this in my own family’s experience of caring for my grandfather until his death from Alzheimer's and my past work with research participants and their families enrolled in Alzheimer drug trials. As the person with Alzheimer's worsens, their ability to recall memories, names and shared family stories and histories, dwindles. Moreover, their ability to communicate verbally diminishes. Remembering loved ones, lives shared with one another, and communicating this, is one of the most important and primary ways we engage in the back-and-forth of family life. We plot who we are, and who others are, by remembering this knowledge and recognizing what this means through our actions. These actions only count to others if they are recognized as such by the people around us. This is where the heartbreak of Alzheimer's resides. If someone cannot recognize what a loved one with Alzheimer's does or says as meaningful, then they disappear.

This of course, is not absolute. And a moving piece written by Janelle Taylor challenges the idea that recognizing and being recognized is the ultimate definition of how we become persons (8). In her auto-ethnography about caring for her mother with dementia, she refused to negate the meaning of her relationship with her mother on the grounds that her mother did not recognize her in the usual ways, the ways she had before suffering from dementia. Taylor instead brings the idea of caring to the fore, and speaks of her own experience of redrawing the lines of what counted as an act of care from her mother. Movements and sounds that previously seemed meaningless took on new dimensions as an act to be recognized, and the importance of referencing shared memories was questioned. Here the ways in which people can be in the world corporeally and express themselves, beyond the abilities of coherent cognition, becomes valuable. Taylor maintained a relationship with her mother based on seeing care between them as being present, if altered.

Bearing Taylor’s experience and the heartbreak and grief of ‘losing’ someone to Alzheimer's in mind, I look toward my impending fieldwork and past experiences with my own personal concerns and ponderings. Like my peers, I am invested in what I will research beyond an intellectual curiosity (and lord, you have to be to undergo the particular torture that is a PhD). I care about the experiences of people with Alzheimer's and their family members and will be working closely with both. Because of this I wonder, where in the experience of questioning the personhood of someone with Alzheimer's, can we be kind?  I offer Taylor’s experience as a contemplation of what might be achieved if we relax the methods and boundaries by which we judge the presence of personhood of someone with Alzheimer's. In my first estimation, more room arises for the way someone dealing with very specific and difficult challenges might be able to be in the world and experience life meaningfully. I say that this is a powerful way to be kind to someone in this position, and perhaps to feel someone else’s kindness towards us. I wonder also what effect recognizing a loved one’s ‘there-ness’ for longer would have on the experience of their family members. If new ways of imagining and finding the inner life of a loved one with Alzheimer's were entertained, would their personhood live longer? If so, is this not also a way to be kind to ourselves? If it hurts so deeply to lose someone we love, what happens if we redraft the ways by which we supposedly lose them?

(1) Dalziel, W. B. "Dementia: No Longer the Silent Epidemic." CMAJ: Canadian Medical Association Journal = Journal De L'association Medicale Canadienne 151.10 (1994): 1407-09. Print.

(2) Davis, D. H. J. "Dementia: Sociological and Philosophical Constructions." Social Science & Medicine 58.2 (2004): 369-78. Print.

(3) Faubion, James D. The Ethics of Kinship : Ethnographic Inquiries / [Edited by] James D. Faubion. Lanham, Md. : Rowman & Littlefield, [2001], ©2001., 2001. Print.

(4) Feinberg, Richard, and Martin Ottenheimer. The Cultural Analysis of Kinship : The Legacy of David M. Schneider / Edited by Richard Feinberg and Martin Ottenheimer. Urbana : University of Illinois Press, [2001], ©2001., 2001. Print.

(5) Fontana, Andrea, and Ronald W. Smith. "Alzheimer's Disease Victims: The 'Unbecoming' of Self and the Normalization of Competence." 1989: 35. Print.

(6) Kontos, P. C. "Embodied Selfhood in Alzheimer's Disease: Rethinking Person-Centred Care." Dementia (14713012) 4.4 (2005): 553-70. Print.

(7) ---. "Ethnographic Reflections on Selfhood, Embodiment and Alzheimer's Disease." AGEING & SOCIETY 24 (2004): 829-49. Print.

(8) Taylor, Janelle S. "On Recognition, Caring, and Dementia." Medical Anthropology Quarterly. 4 (2008): 313. Print.