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Exterior of a care facility with a green lawn in the foreground. People are seated in a covered outdoor area and a pedestrian and a person using a wheelchair approach on a paved path.
Cultural narratives, ableism and ageism dehumanize people with dementia, and present their lives as disposable. (Pixabay)

COVID-19, stigma and the scandalous neglect of people living with dementia

Over 80 per cent of Canada’s COVID-related deaths are associated with nursing homes, with the majority of them being older persons living with dementia.

Moreover, recent international research suggests that COVID-19 public health restrictions have contributed to tens of thousands of additional deaths among people living with dementia in nursing home settings as a result of barriers in access to care and social isolation.

This is a national atrocity, and worse, one largely of our own making.

The role of stigma

From the beginning of the pandemic, what has been striking for us is how little mention there has been in the media regarding the role of stigma in shaping care practices and public health response strategies to COVID-19.

We are critical social scientists with expertise in dementia, ethics, and long-term care. Collectively our work is motivated by a shared concern about how stigma associated with dementia consistently enables and legitimizes restrictions on the freedom of individuals living with dementia, and denies them the opportunities to pursue life-enhancing relationships and activities.

Rows of small white crosses planted in grass
A man looks out the window at the Camilla Care Community Centre in Mississauga, Ont., in May 2020, overlooking crosses marking deaths of multiple people that occurred during the COVID-19 pandemic. THE CANADIAN PRESS/Nathan Denette

We have traced this stigma to two cultural narratives about dementia: with memory loss there is a total erasure of the self; and the medicalization of memory loss, which reduces nursing home care to supporting basic physical safety and comfort. Together these narratives perpetuate a collective representation of persons living with dementia as “non-persons.”

This highlights the inherent ableism and ageism that dehumanizes and demarcates the lives of people living with dementia as disposable. Critique of this representation of people living with dementia as disposable must be a central part of public discussion and debate. Without that critical assessment, reform strategies are doomed to fall short of achieving the radical change that is needed.

Conditions well-suited to COVID-19

The toll of COVID-19 in Canada’s long-term care homes is the result of structural conditions that have long been identified by researchers in the field of aging studies. COVID-19 has efficiently exploited these conditions, most notably the heavy reliance of nursing homes on a temporary and casual workforce, low staffing levels and inadequate care supplies.

Analyses of these structural conditions have featured prominently in media coverage and related reform strategies including: non-profit public provision; permanent employment and benefits for providers; minimum provider-resident ratios and integrating long-term care into the federal health portfolio.

While such analyses and reform strategies are critically important and are not to be disputed — indeed, we too have argued the need to address these structural conditions — our analysis pushes further.

A new ethic of dementia care

To achieve real transformation, we need system-level efforts to improve structural conditions in nursing homes, but we also need a new ethic of dementia care.

Specifically, we need an ethic that challenges stigma by broadening the duty of care to include fully supporting the capacity of individuals living with dementia for creativity, imagination and other positive potentialities. This would require the provision of life-enriching opportunities for persons living with dementia, and the support of their engagement with social life to the fullest extent possible.

This is consistent with Canada’s National Dementia Strategy to eliminate stigma and create dementia-inclusive communities. It is a call for creative, visionary and transformative reform at a time of moral urgency.

An elderly woman sits alone with her chin resting on her hand, looking out a window.
An elderly woman looks out from Maison Herron, a long-term care home in the Montréal suburb of Dorval on April 12, 2020. THE CANADIAN PRESS/Graham Hughes

It is our argument that a new ethic of care is urgently needed to ensure that the goals and standards of dementia care focus on supporting the life enrichment of persons living with dementia. This requires a model that draws on the fields and sub-fields of human rights, citizenship, political economy, feminist care ethics and “embodiment,” a field that aims to understand bodily experiences as ways of knowing.

This model is well suited to address the stigma associated with dementia and the structural inadequacies of nursing homes that are responsible for the neglect and harms that we have seen in this pandemic, as well as before COVID-19.

The model also recognizes that our bodies — our capacities, senses and socio-cultural dispositions — are central to self-expression and to our engagement with the world. With cognitive impairment, embodied self-expression becomes the primary means of communication and as such it is a matter of social justice. Consequently, this model holds states responsible for supporting these rights in practice through regulation and redistribution of social and economic resources.

We hope that social and health scientists, gerontologists, ethicists, policy-makers and care providers who are equally committed to revisioning nursing home care will agree, and devote resources to this collective effort. It’s time for a new ethic of care to replace the stigma of dementia.

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