When a person with dementia moves into a nursing home, he/she is not only physically transferred from one location to another; the relocation also involves a reconfiguration of everyday and intimate relationships of care. Whereas everyday life before the placement is primarily shared between persons with dementia and family members (1), care professionals and other residents now become the ones with whom the person with dementia shares most of everyday life. Family members, on the other hand, become ‘relatives’ and ‘visitors’ and shared life with the person with dementia, will most often take place in an institutional context, becoming more bounded and arranged as a result. Even though the relocation most often implies a delegation of everyday care from family members to professionals, in many countries in the Global North, it is still expected that families take active part in care practices. In Denmark, where this study was conducted, family members are seen as collaborative partners in dementia care, and the active involvement of families in care is named as one of five foci in the National Action Plan on dementia care (Danish Board of health 2017).
In our efforts to understand the ambiguous and often conflicting relationships that we observed during fieldwork on a dementia ward in Denmark, we have come to think of the relations between persons with dementia, family members and care professionals in nursing homes as a ‘care-troika’. The notion of ‘troika’ originally refers to a traditional Russian harness contraption, which involves using three horses to pull a sleigh. In our use of ‘care-troika’, we emphasize the relational collaboration between care professionals, family members and persons with dementia in nursing home care, and the shared responsibility and authority in the provision of care.
In our analysis we approach care as a ‘doing’ and a relational accomplishment (Schwennesen 2019, Moser & Pols 2010, Mol 2008), emphasizing how family members and care professionals are positioned in divergent ways in dementia care practices. In our fieldwork, this was the case, especially in a temporal sense; whereas family members draw on a historical memory of the person with dementia directed towards ‘sustaining the person’ over time, professional care was more directed towards here-and-now situations and a desire to maintain a calm and safe atmosphere among the residents at the nursing home as a collective. Even though these divergent care practices were directed towards the same goal of creating pleasant lives for persons with dementia, the direction of care differed in significant ways. These differences gave rise to highly ambiguous relationships and ongoing negotiations of intimate and pertinent questions such as: what are the care needs of the person with dementia? What is the person like? And ultimately, who cares best?
Drawing on anthropologists who have critiqued the image of persons with dementia as ‘fading’ and as defined only their by cognitive capacity (Thygesen & Moser 2010, Taylor 2008, Leibing 2006), we understand persons with dementia as co-constituted through relationships with others. In doing so, we argue that these differences not only express different perceptions of care needs, but also different enactments of the person with dementia. To illustrate these points we introduce the case of Peter (2).
Who is Peter?
Peter has had an Alzheimer diagnosis for about 10 years when Simone meets him for the first time, during fieldwork. Peter lives in a nursing home, with regular visits from his wife Lone. Throughout fieldwork, it became increasingly apparent that care workers and Lone had very different understandings of who Peter was as a person. Let’s start with his wife Lone:
“Peter, he loves people, he loves being with other people. He is extremely gallant and kind. (…) He is very helpful and really enjoys having contact with other people (…) He doesn’t want to be a burden to others” (Lone, Peter’s wife).
Lone describes Peter as social and kind, quiet and shy of conflicts, and as someone who is at risk of becoming invisible like the sweet children in a kindergarten, whose needs are overlooked because they never complain. He is a person who settles with what he is given and does not want to trouble the care workers.
When Lone visits Peter, she enjoys going for walks with him and describes him as a good conversation partner who stays updated on the latest news and can debate current issues. During her visits they attempt to mimic their previous relationship, by talking and debating during their walks together. Lone’s understanding of Peter relates to his previous identity as a creative architect with hobbies such as squash and their shared life as upper-class intellectuals enjoying travelling and arts exhibitions.
The staff members on the other hand, have a quite different understanding of who Peter is, based on their time with him at the nursing home:
“You don’t know where you have him. With a person like Peter, you cannot say: ‘Shouldn’t I just help you take off your sweater?’ Because then he might get aggressive and he can become violent. So, if you want to help him take a shower for instance, you may only be able to do so if you help him into the shower with his clothes on. Then he may be able to feel that he is getting wet and needs to take off his clothes” (Martin, care worker)
Martin describes Peter as a challenging resident. He emphasises that Peter needs a lot of assistance with daily living activities, such as hygiene, eating and drinking, but explains that Peter often express that he does not need any help and does not think he is ill. This lack of alignment between care workers’ understanding of Peter’s needs and his own understanding of what he needs, sometimes leads to dangerous situations, especially in relation to intimate care:
“Yesterday, when I tried to assist Peter in showering, he came in and grabbed both my arms and pushed me into the wall. At that point I just tried to remain calm. I just started smiling and laughing. Because I had to” (Martin, care worker)
Only a few care workers, like Martin, help Peter with his intimate care as most of the other staff feel unsafe when they are alone with Peter. Martin also feels uncomfortable and unsure of what to do in situations like these. Peter is also often involved in conflicts with other residents, and the care workers struggle to include Peter in communal activities, for his benefit, as well as for the residents. Their understanding of Peter is in many ways configured by care practices directed towards both Peter’s wellbeing as well as the wellbeing of the other residents, and their own safety and the nursing home as a whole.
Multiple persons with dementia, multiple forms of good care
The different understandings and enactments of residents at the dementia ward often gave rise to very different perceptions of needs and understandings of what constitutes ‘good’ care. Whereas family members enact persons with dementia mostly on the basis of a biographical memory that goes back in time, based on love, kinship and a shared life, care workers base their understanding of the person with dementia on a professional and situational understanding of the person with dementia. They only know of the person with the disease and since the care needs of the person define the working tasks of the care workers, their attention is in large part drawn to the shortcomings and disease-related needs of the person. Family members on the other hand, were more focused on enjoying the time they had together. In doing so, they often sought continuity between life before dementia and their loved one’s current life in the nursing home by focusing on the biographical talents and traits of the person that they had come to know in their life together.
It was in these ways that while the care of family members and professionals had the same overarching aim of enabling a pleasant life with dementia, care practices often diverged. The care practices of family members were in large part singular: directed towards one individual, and based on a shared history and shared memories. Their care practices were relational, kinship-based, irreplaceable, emotional, intimate and uncompromising – only the best was good enough for their relative in the nursing home. The care practices of professionals, on the other hand, were directed at achieving an enjoyable collective life at the nursing home. The emphasis of their care was on creating a nice and calm atmosphere on the ward, wherein residents could feel comfortable and safe. As a result, professional care practices were pragmatic and filled with compromises necessary when taking care of the 10 people with dementia living on the ward.
Ambiguous and conflicting care troikas
In practice this binary understanding of the two forms of care identified in the care troikas was of course often blurred. Family members did care about the collective and other residents at the nursing home, which became evident for instance, when they bought gifts for Christmas for them to enjoy as a collective. And although the professionals were paid, replaceable workers, they were also loving and genuinely caring and developed close relations with each of the residents. As they simply spend much more time with the residents, in comparison to family members, their relationships were often closer and more intimate than the relation between persons with dementia and their family members. Yet, paradoxically, there was at the same time a sense among care workers that they should not become too intimate and close to the residents, and allow family members to experience themselves as the most close and intimate. Family members, on their part, often worried that the care from care workers was not sufficient, and many complained to higher authorities about the quality of care. Interestingly, both professionals and family members described to us how their position enabled them to provide the best care in opposition to the position of the other group. Whereas family members explained how they knew the person with dementia best, and therefore knew best how to care for the person, staff members emphasised how they knew more about dementia care, how to treat infections and how to react with sensibility in critical situations.
These blurred and ambiguous relations between care workers, family members and residents, amount to what might be thought of as care troikas in the Danish dementia ward. Both family members and care workers were dependent on the care practices of the other, and only in rare situations, one part wanted to get rid of the other. Yet, while they recognised their interdependent relationship, they also tried to delineate and distinguish their care practices from the care practices of the other.
The ‘care-troika’ as an analytical concept
The concept of care-troika sheds light on how professionals and family members are positioned in divergent ways in care relations which may give rise to different enactments of who the person with dementia ‘is’, how the person acts and which care practices are needed. The case of Peter illustrates how the argument of who provides the best care, is not just an argument about what good care is, but also an argument about who Peter is as a person, hence contributing to a relational understanding of what makes up a person. As the capacities of persons with dementia are enacted and re-enacted in relations with other actors, it follows that these capacities and characteristics are not absolute, rather they are enabled in concrete settings and the relations in which they are expressed. Hence, the different understandings of Peter presented above are not merely perceptions – Peter does really act differently when he is with staff members and when he is with his wife. Thinking with the concept of care-troikas can help us better understand the often ambiguous and conflict-ridden relationships between care professionals, residents and family members that arise when people with dementia move into nursing homes. Negotiations between them are not just a matter of how to constitute good care in specific situations, but also a matter of who the person is and how he/she acts.
Simone Anna Felding is a PhD candidate at the German Center for Neurodegenerative Diseases (DZNE-Witten) specializing in health, technology and dementia. She is carrying research into the implementation of social robots for people with dementia in nursing homes as part of the Marie-Curie ITN programme DISTINCT.
Nete Schwennesen is Associate Professor of Anthropology at the University of Copenhagen. Her research explores care arrangements and how they are reconfigured by health technologies, focusing particularly on how imaginaries, epistemologies and practical care work intersects. She has done ethnographic fieldwork in Scandinavia on topics such as dementia care, remote physical rehabilitation, diabetes and selective reproduction.
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
- We use the term family members throughout this blog post, although relatives to people with dementia are not necessarily kin. In this fieldwork however, all relatives were also family members (spouses or children) and we have therefore chosen to use this term.
- Names and personal details have been changed to allow for anonymity of research participants.
Danish board of health. Demenshandlingsplan. Et trygt og værdigt liv med demens, 2017 https://sum.dk/Media/B/2/Demenshandlingsplan-2025-Et-trygt-og-vaerdigt-liv-med-demens.pdf [Downloaded May 12th 2021]
Mol, Annemarie. The logic of care: Health and the problem of patient choice. Routledge, 2008.
Mol, Annemarie, Ingunn Moser, and Jeannette Pols, eds. Care in practice: On tinkering in clinics, homes and farms. transcript Verlag, 2010.
Schwennesen, Nete. “Algorithmic assemblages of care: Imaginaries, epistemologies and repair work.” Sociology of health & illness41 (2019): 176-192.
Taylor, J. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly 22: 313–35
Thygesen, Hilde, and Ingunn Moser. “Technology and good dementia care: an argument for an ethics-in-practice approach.” In Schillmeier, M., & Domenech, M. (eds)New Technologies and Emerging Spaces of Care. Farnham: Ashgate(2010): 129-147.
Leibing, Annette. “Divided gazes: Alzheimer’s disease, the person within, and death in life”. In Leibing A. & Cohen L (eds). Thinking About Dementia: Culture, loss, and the anthropology of senility. Rutgers University Press, 2006, pp. 240-268
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