Long-Term Care Homes: Carceral Spaces in Times of Crisis or Perpetually?

Residential long-term care (LTC)¹ is widely regarded as a necessary form of care for older people with dementia and high support needs (Chivers & Kriebernegg, 2017), while simultaneously regarded as places to be feared and avoided. In many countries across Europe and the Western world (including Australia, Austria, Canada, Germany, Norway, Serbia, Spain, Sweden, the United Kingdom, and the United States), LTC for older people with dementia is an established part of the social care system; yet exists alongside public commitments to support care at home (Ilinca et al., 2015). In this article, we seek to answer the question: are long-term care homes for older people with dementia carceral spaces in times of crisis or perpetually? To answer this question, we use narrative analysis and explore two specific cases of women with dementia trying to leave LTC in the United Kingdom and Australia, paying attention to descriptions of how such spaces are felt and experienced by residents. While segregation and exclusion were issues for people with dementia living in LTC long before COVID-19 (see, for example, Bartlett, 2007; Estabrooks et al., 2020; Fabris & Aubrecht, 2014), COVID-19 presented new opportunities to question and reconsider the role of LTC in society (Herron et al., 2021; Montgomery & Dacin, 2021).

By foregrounding the experiences of two women with dementia trying to leave LTCs—one that occurred pre-COVID-19 and the other during COVID-19—this article draws attention to peoples’ feelings of confinement, during the pandemic crisis and before. Our central argument is that LTCs may be “carceral spaces” not only in the sense of physical barriers and boundaries but also in terms of affective restraints and inhibiting qualities. These obstacles can also be understood as generative, insofar as they may provoke the desire to leave. We draw on and interweave the concepts of affective citizenship (Fortier, 2016) and affective atmosphere (Anderson, 2019) to support our argument and frame the discussion.

When we look at people who live with dementia in LTC, their resistance to disciplinary practices such as the inability to leave during COVID-19 lockdowns is commonly pathologized and treated as evidence of their incapacity (“they don’t have the insight to know this is the best place for them”). As a conceptual framework, affective citizenship offers a path forward for new possibilities and generative potentialities—a postpandemic future where people and countries can exercise their autonomy and creativity, learning from the pandemic and working toward improvement. Finally, we reflect on the potentialities conditioned by the pandemic, such as a change in “mind-set among professionals” about affording older people choice and control when it comes to care settings (Ilinca et al., 2015, p. 3).

The COVID-19 global health crisis has disproportionately affected LTC residents (Gordon et al., 2020). At the time of writing (autumn 2021), it was estimated that 41% of COVID-19 deaths worldwide were LTC residents, amounting to “just over 325,000 of deaths of care home residents attributable to COVID-19 since the start of the pandemic” (Comas-Herrera et al., 2020, p. 2). Throughout the pandemic, LTCs have made headline news in an unprecedented way (Miller et al., 2021). Prior to the pandemic, LTC researchers had been sounding the alarm for over 50 years (Estabrooks et al., 2020). The pandemic also brought concerns about the exclusionary nature of LTC to the fore, as public health orders restricted the number of visitors to LTC (World Health Organization, 2020), leading some governments to introduce a complete ban on visiting (e.g., the Department of Health and Social Care, 2021). The global public health crisis undoubtedly has adverse effects on LTC residents; however, we question whether LTCs are only spaces of confinement in times of crisis or are so perpetually.

Most people indicate a preference for receiving care at home, as and when the situation for intensive support arises (Home Care UK, 2021). Nonetheless, in developed countries, about 2% to 7% of older people live in LTCs (International Long-Term Care Policy Network, 2021). Most LTC residents are aged 85 years or above, have multiple complex conditions, and need help with activities of daily living—four-fifths of residents are estimated to have dementia (Anand et al., 2021). Older people often move to an LTC home at a time of crisis or “tipping point” (Samsi et al., 2022). Such moments are complex and personal and may be due to various factors, such as an irreparable breakdown of support at home and/or a bed in a person’s preferred care home becoming available (Samsi et al., 2022). Ideally, the person who is moving is involved in the decision and has the chance to voice an opinion about the choice of an LTC, but often a person with dementia is excluded from such discussions (World Health Organization, 2020). This was certainly the case in the 1960s and 1970s when people with dementia were simply told by family members or authority figures that they were being “taken for a ride” when moving the person permanently into a care home (Meacher, 1972). Nowadays, it can happen because the person with dementia is assumed to have “weak or no agency,” so others take over when it comes to decision-making (Boyle, 2014, p. 1130).

There is growing awareness about the importance of involving older people with dementia in decisions about their care (WHO, 2020). Nonetheless, people with dementia still reportedly find themselves confined to an LTC unwittingly, as once a person has moved into an LTC, it can be difficult for them to leave. For example, a man with dementia living in an LTC told one of the authors during her doctoral research, “you can get in alright, but you can’t get out” (Bartlett, 2007). In Australia, where three-quarters of deaths from COVID-19 have been in LTCs for older people (Cousins, 2020), some residents regret their decision to move in but now feel stuck there (Steele et al., 2020). Not everyone who lives in an LTC will experience it negatively; indeed, there are many instances of exemplary practice in the LTC sector (see, for example, the English-based project My Home Life, Owen, 2012).

We feature two specific real-life situations involving women with dementia living in LTC and trying to get out. The first one occurred before COVID-19 in England in February 2014. Besides answering our research question, we do so to address the lack of literature on residents’ feelings and perspectives within LTC. In England, like many countries, the majority of care is provided by unpaid caregivers with about 4% of the population over the age of 65 institutionalized due to care needs. The United Kingdom has a distinction between means-tested social care and public health care, and “strong consensus on the urgent need to reform the social care system” (Byrd et al., 2022). The second case took place during the COVID-19 pandemic in Australia in June 2020. Australia introduced the National Disability Insurance Scheme in 2013 to support people with disabilities, and has a separate government-subsidized “Aged Care” system that funds LTC. Similarly to the United Kingdom, 7% of the older population is institutionalized, the vast majority of which are people living with dementia (Low et al., 2022). Australia spends 1.3% of the Gross Domestic Product on all forms of aged care, 65% of which is for residential LTC, while the United Kingdom expenditure represents 1.8% of the GDP. In both cases selected for the narrative analysis, the trigger was a felt need to act in response to the experience of confinement. Furthermore, both women had to escalate their case through officialdom before it was heard.

This article is informed by the concepts of carceral spaces, affective citizenship, and affective atmosphere. While carceral spaces provide a background to our analysis, the ideas regarding affective citizenship and atmospheres create a basis for examining how crises experiences, including but not only related to COVID-19, have adverse effects on older people with dementia in LTC. The concepts are defined briefly below and then used to analyze the experience of crisis and confinement for older people living in LTC homes.

This article uses narrative analysis to present a close read of two highly public but also personal experiences of LTC. Narrative analysis lends itself to close reading and understanding the interplay between a story in focus and a broader political, social, or cultural context. As such, it endows researchers with insights into different phenomena and allows for their interpretation (Frost, 2009). While there is no single narrative method, narrative analysis requires the researcher to adjust their lens to specific nuances and complexities to interpret implicit meanings that are otherwise inaccessible to lay readers. Instead of focusing on quantification and generalization, the method deals with the particular and the specific and prioritizes human agency (Robertson, 2017). The method is chosen due to its flexibility and the ability to amplify marginalized voices (Carlisle, 1994).

Since the early days of the COVID-19 pandemic, we noticed that media reports from LTC tend to focus on the caregivers, friends, or family members’ perspectives, related to their inability to visit. As such, we looked for articles on the experiences of people living with dementia in LTC. Having a multilingual authorship team, we initially included articles coming from English-speaking cultures, as well as those written in Croatian, Hungarian, Norwegian, and Serbian. The ways in which LTC is organized in these countries vary significantly, which is why we decided to limit the scope to articles written in English and coming from countries that have comparable LTC systems. The two cases in focus were chosen because they fulfilled the inclusion criteria in terms of thematic focus and linguistic and cultural context. In addition, drawing on the case study approach (Crowe et al., 2011), we used convenient sampling to select the two cases. According to this method, the two cases were selected because they were readily and easily available. This means that the authors have been familiar with Ms. Sykes’ and Ms. Rogers’ accounts, and have selected them because these two articles best reflect the situation in LTC prior to and during the COVID-19 pandemic and are exemplary of the themes the authors are focused on. We approach these articles as narratives based on their sequential and consequential nature and conceptual and analytical force, meaning that the texts in focus draw from events that have been selected, organized, connected, and evaluated as meaningful (Riessman & Speedy, 2007).

To interpret meanings implicit in these narrative accounts, we follow the analytic steps proposed by Robertson’s coding scheme for analyzing the “story” (Robertson, 2017). Initially, we operationalize the story and its narrative elements and orient the reader by describing the context, including time, place, participant, and the specifics of the situation. Furthermore, we describe the complicating actions that triggered the destabilization of the situation (e.g., a family member takes a person out of the care home without permission) as well as the resolution and narrative tools used to bring the reader back to the present moment. Finally, we evaluate the discourse and the ways in which the story has been told.

The first story is of Ms. Manuela Sykes, who won the right to return to her flat in Westminster, UK, at the age of 89 and with an 8-year-long history of dementia. At the time, she was living in an LTC and was deprived of her liberty under the Mental Health Act (2005) due to her dementia. The story has been reported in the Court of Protection and can be found in the British and Irish Legal Information Institute (BAILII, 2014) database, as the judge gave permission for open reporting in line with Ms. Sykes’ wishes and background as a campaigner. Our insights into Ms. Sykes’ account come from media reports and court documents that were made public online—which she endorsed, arguing that it would be in the public interest that her case is not treated anonymously, as it is commonly the case for people in vulnerable situations. The initiative was sparked by feelings of misery after being deprived of her liberty at LTC. The judgment document, which serves as the main source of insight into Ms. Sykes’ case, is marked by legal language and form, and begins with a presentation of Ms. Sykes:

She has played a part in many of the moral, political and ideological battles of the twentieth century. A vegetarian from an early age; a lifelong feminist and campaigner for women’s rights; a Wren in the Fleet Air Arm; a committed Christian; a political activist who stood for Parliament; a councillor on the social services committee of the local authority that now authorises her deprivation of liberty; the editor for 40 years of a trade union newspaper; a helper of homeless people and an advocate for them; and a campaigner for people with dementia, from which condition she now suffers herself. (BAILII, 2014)

Being a lifelong activist, Ms. Sykes expressed her wishes to have a “last chance to exert a political influence” (Manuela Sykes in Dementia Care Court Victory, 2014) and to leave “with a bang, not a whimper” (Manuela Sykes in Dementia Care Court Victory, 2014). Before the readers are familiarized with the court ruling, the document details Ms. Sykes’ situation, her mental capacity, relevant legal framework, including deprivation of liberty provisions, as well as with determination of her “best interest” and the law.

The second story is of Ms. Lyn Rogers, who lives in LTC in Victoria, Australia. It is reported in the July 2020 edition of Alzheimer’s Disease International newsletter (Rogers, 2020). While both stories have a legal context, the second story is framed in a more personal way. The piece is called “My week living with dementia in a nursing home” and is a short first-person account of her daily experiences in the home. Ms. Rogers presents her experience of living in LTC for over two years, “[. . .] after [she] ha[s] been diagnosed with dementia and other comorbidities, like most people over the age of 65 [. . .]” (Rogers, 2020, p. 10). At the start, Ms. Rogers explains what prompted her to come out publicly with her case:

[f]or many weeks during this pandemic, I was denied the right to walk (around the botanical gardens nearby) and had to write a formal letter of complaint, which was taken to management, the owners of the facility, and eventually ended up with the Minister of Health. (Rogers, 2020, p. 10)

Ms. Rogers expresses her dislike for living in LTC but rationalizes this choice by stating her desire not to be a burden to her family and friends. In her text, Rogers describes how each weekday looks for her by focusing on feelings. For example, she describes feelings of empowerment after exercising agency by reaching out to the authorities and claiming her right to walk and by participating in an online peer-to-peer group with other people who live with dementia. Ms. Rogers also describes feelings of worry and frustration caused by the monotony of everyday life and lack of activities, as well as those of infuriation after being left to sit for hours after breakfast. “My worry is, although this is not happening to me today (or this week), will it be what happens when I can no longer advocate for myself?” (Rogers, 2020, p. 10), wonders Rogers and expresses her expectations related to what she sees as common development of life at LTC. She observes the increase in the distress, loneliness, isolation, and boredom caused by the lack of activities—especially during the “dreaded weekends” (Rogers, 2020, p. 10) of the other residents, and describes these feelings as “a normal human response” (Rogers, 2020, p. 10). Rogers also complains about having “a childlike timeline for adults” (Rogers 2020, p. 10), which reflects in early meals and “a healthy [. . .] but a bit mean” limit of 2 glasses of wine during a happy hour. After reaching the Ministry of Health, Ms. Rogers’ case was heard, and she was eventually “allowed” to walk to the gardens again—something which she enjoys doing every day (Rogers, 2020).

We now incorporate the concept of carceral spaces with the lenses of affective citizenship and atmospheric walls to discuss the two cases and draw attention to the experiences of crisis and confinement for older disabled people.

We acknowledge the body of research that aims to improve and feature positive examples of LTC spaces and care models and the concerns that deinstitutionalization can downshift more unpaid care to women and especially socially marginalized women (e.g., Armstrong et al., 2023; Baines & Armstrong, 2018; Theurer et al., 2015). Yet LTC is normalized and naturalized as a “good place” for people with complex care needs and/or dementia—making it less likely to question its inherent value or recognize the ways in which the very existence of institutional care stifles our imagination for home or community-based care for older people with dementia. It is, however, imperative that any critiques of LTC include awareness of the working conditions. Some studies find larger institutions are safer for workers than smaller home-like settings (Braedley & Martell, 2015), at the same time as they increase the risk of physical, sexual, and other harm for residents (Post et al., 2010). As such, we can hold that care at home is the ideal to strive for, and consider Cranford’s (2020) call for coalitional approaches that seek to balance quests for worker security with recipients’ struggles for flexibility through shared forms of collective action.

Evidently, the carceral nature of LTCs intensified during the pandemic crisis, as governments and LTCs around the world banned visitors to mitigate disease transmission (International Long-Term Care Policy Network, 2021). Some places stopped residents from accessing certain areas within facilities or stopped people from moving around them at all (Anand et al., 2021). In Rogers’ case, the limitation of her freedom of movement is justified by the need to reduce the spread of the COVID-19 virus. Indeed, in some countries, such stringent measures were enforced rapidly and proved effective in stopping the virus from entering LTCs, “leading to zero infections among long-term residential care home residents” (Lum et al., 2020, p. 378). In places where LTC staff could not manage the magnitude of the crisis, the military was called in to restore order, which may be observed as an expression of disciplinary power. Undoubtedly, the situation during COVID-19 shows how vulnerable the occupants of carceral spaces are to yield power. However, Lyn’s pre-pandemic case underscores the carceral nature of LTCs during ordinary, less troubling times.

This article highlights the experiences of crisis and confinement for older people living in LTCs and shows how and why such spaces might be considered carceral. The proposition that LTCs are carceral spaces is not surprising, as we have a long history of warning, research, and commentary on the need to at least overhaul residential care (Estabrooks et al., 2020), and more ideally, move toward complete deinstitutionalization (Herron et al., 2021). As Dowling argues, the COVID-19 pandemic crisis has rendered visible the care crisis (Dowling, 2021, p. 12).

Violence and harm were common in LTC long before the COVID-19 crisis, and the pandemic has intensified these harms. The pandemic highlighted the importance of acting on the overwhelming body of research and advocacy, asking us to turn our social care systems away from institutional models. Instead, the horrors of LTC in the pandemic are misinterpreted as a call to build capacity within the social care system to “respond better next time” rather than radically question the entire system. Unless this is properly addressed, we can expect more situations with mass casualties in LTC, or worse, to happen in the next pandemic, war, natural disaster, or another sort of global crisis. Due to the false assumption of regarding older people being the only ones contracting the virus, they were almost completely cut off in the early days of the pandemic in the United Kingdom. By closely looking at this with an affective lens, one might say we reacted in ways that were “normal” and “natural” under the circumstances of a plague (lockdown, segregation, distance, isolation). This is learned and habituated rather than “natural,” and reinforces the ties between public health on one hand, and discipline and control on the other. The affective lens shows not only what we can learn from people living with dementia, but also magnifies the recognition of problems with LTC that are provoking a desire to leave. As we emerge from the most difficult stages of COVID-19, we need courage to truly consider deinstitutionalization for LTC.

In the words of one leading gerontologist: “bold thinking is needed by the research community about the future of residential and nursing home care: challenging rather than colluding with current models of care” (Phillipson, 2020). Taking a path against carceral management of older people with dementia is a bold one, yet, it is perhaps more possible now than ever before. The COVID-19 pandemic has underscored that policy expansion, public funding, and innovation should focus on care in the community. We cannot dismiss that most older people with dementia who need support currently receive it in the community, and most people explicitly indicate they want to receive care at home if they ever need it.

Disability movements and other activists who work across the globe, and even mainstream health research, underscore the essential importance of listening to the voices of those to who the services are directed. Governments have long indicated care at home is a top priority, and yet continue to disproportionately direct public funds toward LTCs (Marier, 2021). We thus puzzle, how LTCs that operate as carceral spaces continue to maintain a stronghold in our health and social care systems? As we have shown, addressing this issue involves attending to the affective citizenship and instances of everyday exclusions experienced by people living in LTCs that normalize restraint and disenfranchisement for older and disabled people. While we entered our analysis attuned to the alarms voiced by scholars, we end by listening to Kate Swaffer, an activist living with dementia, who points out: “We must not be forgotten, and must not be left behind, and hopefully, this may be the positive side to the pandemic” (Swaffer, 2020, p. 6).