Separate and Unequal: A Time to Reimagine Dementia

Abstract

The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict “no visitor” and lockdown policies out of concern for their residents’ physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep and pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form “Reimagining Dementia: A Creative Coalition for Justice. ” We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.

Relational and Aesthetic Accountability: Considerations of a Research-Based Playwright

“…Both theater and research are collective endeavors and ways of engaging community members (as research participants and/or audiences) despite that both traditions customarily prize the singular, independent genius. Here I join colleagues in theater and research across disciplines who work with care, and additionally aim to be relationally and aesthetically accountable (for some examples, please see Baer et al, 2019; Bhattacharya, 2016; Gallagher & Kushnir, 2020; Goldstein, 2012; Kontos et al, 2021).…”

The Impact of Socially Assistive Robots on Human Flourishing in the Context of Dementia: A Scoping Review

“…Despite these limitations, the angle of human flourishing is one which invites further thinking about existential meaning in the context of dementia. It also corresponds to the small but growing literature on flourishing in dementia [ 66 ], especially in the context of the use of art-based interventions/therapies such as dance and music [ 65 , 67 , 75 ] and in cultures where the ageing person is valued based on traditions and customs [ 76 ]. There are clear clinical and moral implications of the attitude towards people with dementia as persons [ 15 ], which could warrant greater attention in the context of the development of technologies intended to facilitate the social life and social interactions of the person with dementia.…”

Death in Advance? A critique of the “Zombification” of people with dementia

“…As a consequence, they often have an increased risk of morbidity and mortality than older patients without cognitive impairments (Ralph & Espinet, 2018). Recent commentaries have even drawn connections between the metaphorical imagery of living death and the high mortality rates of people with dementia in long-term care facilities during the COVID-19-pandemic (Kontos et al, 2021).…”