Separate and Unequal: A Time to Reimagine Dementia
Pia Kontos, Mary L. Radnofsky, Phyllis Fehr, Mike R. Belleville, Frances Bottenberg, Mary Fridley, Susan Massad, Alisa Grigorovich, Jennifer Carson, Kari Rogenski, Kyrié S. Carpenter, Sherry L. Dupuis, Jill Battalen, David L. McDonagh, Kathryne Fassbender, Peter J. Whitehouse
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 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.