Pia Kontos
One of the defining features of the coalition co-founded by Dr. Pia Kontos of the KITE Research Institute at UHN is its inclusivity, which is evidenced by 16 co-authors on its initial article, including several people living with dementia. (Photo: The KITE Research Institute at UHN)

A global coalition co-founded by a UHN researcher is calling for a major overhaul of dementia care following the tragic toll COVID-19 took in residential long-term care homes in the early days of the pandemic.

"This caused anger and outrage for many," says Dr. Pia Kontos, a scientist with the KITE Research Institute at UHN. "The societal assumption about people living with dementia is that they are not people. That they have no purpose. That they have no meaning.

"These assumptions have enabled discriminatory practices, such as the segregation of people living with dementia, confinement to nursing homes, understaffing, and a lack of meaningful and enriching programming."

At the outset of the pandemic, long-term care residents accounted for more than 80 per cent of all COVID deaths in Canada, prompting the formation of "Reimagining Dementia: A Creative Coalition for Justice" in an effort to challenge stigma associated with dementia, reform long-term care, and create a more inclusive society for people living with dementia and their families. 

The coalition is comprised of people living with dementia and family members, clinicians, scientists, community members, artists, academics, policy-makers, organizations engaged in dementia, disability rights groups, and various social justice movements.

"We feel collectively that people living with dementia should have equal access to health services, well-being, as well as other privileges and opportunities regardless of their degree of cognitive impairment, political views or economic status," Dr. Kontos says.

The work and commitments of the coalition were published recently in The Journal of Alzheimer's Disease in an article co-authored by Dr. Kontos and titled "Separate and Unequal: A Time to Reimagine Dementia." 

The article describes the treatment of people living with dementia in long-term care homes as a "humanitarian crisis."

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