Who is the ‘who’ in dementia carework?

Dementia is an umbrella term for a number of neuro-degenerative diseases that most often affects elderly people and is growing in prevalence globally and probably. Alzheimers is the most common type. Hallmark symptoms are confusion, memory loss, mood swings, and trouble with speech and language. There is no cure, and in most cases the disease progresses until a person with dementia dies from the disease itself, or related complications. As a person with dementia progresses, they tend to withdraw from social and family life. During my field-based research on dementia in London, I sat in on a variety of support groups for people with dementia, their carers and families, and conducted interviews with participants.

My interviews with carers and people with dementia usually spanned hours and were emotional experiences. The grief that carers feel is acute and complicated because for many, dementia creates an altogether bizarre experience in which they grieve for the loss of their person with dementia, who is still physically present and living. Carers and family members of a person with dementia commonly described their loved one as being ‘lost,’ ‘not there anymore,’ or ‘an empty shell.’ At the same time, carers explained to me that their loved ones ‘…were in the next room! Or at the day centre for the afternoon.’ Grief over their person with dementia’s ‘slow death’ and disappearance was a current running below the surface of their lives.

I want to take note of the importance of the painful moments in which carers grieve for the loss of their husband, wife, their father or their mother. I also want to talk about what carers and person with dementias do about this pain. I ask: Why is caring for a family member with dementia so painful? Why are people with dementia seen as ‘not there?’ What happens when we decide that the person being cared for is ‘lost’? What else do we lose? Painful moments in the caring experience of families contending with dementia point to the fact that something deeply cherished about what it means to be a person is being threatened. This allows us an opportunity to think deeply about who we count as a ‘who’ and ultimately why we, as humans, care.

Taking the question of this symposium “Who Cares?” and turning it on its head, I argue that in looking to understand familial relationships of care in the context of experiences of dementia, we must first ask who counts as a person? I propose that in examining how my informants ascertained what makes a person and what spelled their disappearance, we find that engaging in acts of care is powerfully linked to ‘being a person.’ But caring is also a two-way inter-subjectivity, and when a person with dementia is unable to recognize the care they receive, the carer can also come to feel ‘lost’. My research offers powerful accounts of carers reassessing ‘what counts’ as personhood, and thus renegotiating the validity of their loved one’s ‘there-ness.’

In the Western dualist tradition, personhood is often located in our minds, as in Descartes’ famous line, “I think, therefore I am.” This approach poses particular implications for dementia, because it is a disease of the brain – which is commonly understood as the house of the mind. If the mind is under attack, one’s personhood is thus endangered. This was echoed in carers’ comments such as, ‘Her memory’s gone…brain’s got plaques – she can’t remember who she is even, she’s gone” and comments persons with dementia made, saying ‘Give me a new brain! I’d be fine with a new brain!” Thus, if the mind is lost, where is the person?

However, notions of ‘embodiment’ assert that the self primarily resides in the body. They build on Bourdieu’s notion of ‘habitus’ and see the body as the site where personhood and agency is revealed. Here, the corporeal body is the site of a person’s self-expression and interaction with its surroundings. In this, the mind 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. This expands the range by the personhood of a someone with dementia can ‘show up’ in social spheres.

As Pia Kontos argues, we “must embrace the idea that the body is a fundamental source of selfhood that does not derive its agency from a cognitive form of knowledge.” (Kontos 2005, p1) While Kontos goes on to reconsider the physical movements of a person with dementia as demonstrative of their agency, I wish to more explicitly push the boundaries of personhood beyond body and mind. I propose that personhood, or a person’s experience of being in the world, is not an individualised experience at all. Instead, this project is a social undertaking. I suggest that what makes being a person in the world meaningful is the recognition of existing as such by intimate others. Thus, valid status as a thinking, feeling subject relies on relations with others.  Feinberg and Ottenheimer write that by owing things to and caring for people, and having the same done in return, a meaningful shared social life is created and people gain positions as persons within it. Therefore, we are made in the back-and-forth of familial life, in the reciprocity of care. In giving care and having that care received and recognized, we know ourselves to be a person.

But what kinds of social back and forth, or care, do we have to take part in to be counted as a person? This questions touches on the grief of carers’ lives, because it points to what is seen to disappear within their person with dementia. I heard, “I mean she’s not really my mum anymore…she doesn’t laugh at what she used to, no cup of tea waiting when I come round. I have to do all those things…” Another carer said, “I just don’t think he even knows what I do…knows I’m his wife…” I ask, does the personhood of someone with dementia become threatened and fade because they are not seen as reciprocating care the way they used to, or at all? Is a carer’s frustration and sorrow tied to feeling that their efforts are not recognised by their loved one?

Family members of loved ones with dementia told me that they missed ‘the little things he’d do.’ They often felt like that they could no longer recognize their loved one’s part in this back-and-forth exchange; they weren’t sure that ‘he even cares anymore.’  Further, carers feel pain at not knowing what to do or how to help. I heard a story about a distressing and confusing night spent ‘trying to help him look for something, tearing up the house for it, but he couldn’t explain to me what it is he wanted.’ Conversely, a woman with dementia told me about her annoyance that her son told her that ‘I can’t do things anymore – I can look after myself! I can help with Christmas dinner!’ going on to say ‘he doesn’t even realise that I’ve this emergency call button so he doesn’t worry!’

As dementia advances, the ability to recall memories, names, shared family stories and histories, dwindles. Remembering loved ones, lives shared with one another, and talking about these memories with each other is one of the most important ways we engage in the back-and-forth of family life. We map out who we are, and who others are, by remembering these social histories, and recognizing and reaffirming them through our caring actions. Relationships are not a static entity – they exist because we continue to take part in them and build on their history. But these actions only count if they are recognized as such by the people around us.

This is where the heartbreak of dementia resides. If someone cannot recognize what a person with dementia does or says as meaningful, then they appear to disappear. Further, carers feel that they themselves disappear to their loved one. This however, is not an absolute. Some carers and persons with dementia also strove against these disappearances by renegotiating what was being lost in the progression of dementia and re-evaluating what mattered in a relationship’s exchange of care. In Janelle Taylor’s auto-ethnography, she refused to negate the meaning of her relationship with her mother based on her mother’s difficulty recognising her. Taylor’s moving piece brings the idea of caring to the fore, and echoes many of my informants’ experiences, in which they redrew the lines of what counted as an act of care from their person with dementia. As with Taylor, movements and sounds that previously seemed meaningless took on new dimensions as deliberate acts. In some interviews I was told, carefully, about intimate and meaningful events that had occurred in the line of care.

A woman recounted waking to her husband’s nighttime coughing, fetching a glass of water and helping him drink. In the dim light of a darkened room, “he reached out and touched my face and said ‘you look tired, tired’ and some other nonsense, but softly…like a lullaby.” This carer cried as she expressed her relief that “oh, he can see how tired I am, he knows I’m here – he cares…loves me.” She told me, “sometimes he’s still there.” This story illustrates what happens when carers constructed a relationship with their person with dementia based on seeing care between them as still being present, if perhaps altered. This story alludes to other like it, and in them, the importance of referencing and remembering shared memories becomes less important. Instead, the ways in which people can be in the world corporeally and express themselves beyond coherent cognition become valuable. The woman saw her husband’s touch, his recognition of her exhaustion, his lullaby murmuring as an act of care. By doing so, she discerned that he recognised her and thus, granted him ‘there-ness’ because he was a ‘who’ who cares.

Considering the heartbreak of ‘losing’ someone to dementia, and the relief of ‘finding’ them, investigating the methods and boundaries by which care is judged to be present, we can see what care does. Caring makes people. It is the way by which we recognise each other as a someone. In the context of dementia, seeing ‘embodied’ care as real, allowed both carers and person with dementias to be real to each other, be kind to one another. Care is not a static term, but one that is renegotiated on the ground by those performing it.

Considering this, what effect might recognising a person with dementia’s ‘there-ness’ for longer have on the experience of a family? If new ways of imagining and recognizing the inner life of a person with dementia were entertained, would their personhood live longer as well? 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?

Works Cited

Bourdieu, Pierre (1977). Outline of a Theory of Practice. Cambridge University Press

Feinberg, R. and Ottenheimer, M. (2001). The cultural analysis of kinship. Urbana: University of Illinois Press.

Kontos, P. (2005). Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dementia, 4(4), pp.553-570.

Taylor, J. (2008). On Recognition, Caring, and Dementia. Medical Anthropology Quarterly, 22(4), pp.313-335.