Changing the culture in long-term care

Sherry Dupuis speaking at microphoneAs the Canadian population continues to age, more and more people will be diagnosed with an illness causing dementia. By 2014 it is estimated that 50% more Canadian families will be facing Alzheimer’s disease or a related dementia (ADRD); by 2034, over one million Canadians will be living with ADRD.

The dramatic increases in the numbers of persons with dementia will create a range of challenges for the provision of care in both community and long-term care (LTC) home settings due to the related communication, behavioural, and functional issues associated with dementia.

Sherry Dupuis, Associate Professor in Recreation and Leisure Studies and Director of the Murray Alzheimer Research and Education Program (MAREP), a division of the Schlegel-University of Waterloo Research Institute for Aging,  is committed to changing the culture of long-term care to ensure that all persons in the care context, especially those living with Alzheimer’s disease and related dementias, are supported.

Current approaches to care often exclude persons with dementia from decision-making, fuelled by misunderstanding and stigma that view persons with dementia as incapable of communicating their experiences, and thus unable to make meaningful contributions to their own lives and the lives of others. “Persons with dementia deserve to be included in decision-making about how they’re to be treated and how they’re going to live,” explains Dupuis. "A shift is needed to a culture that ensures that all key stakeholders including clients, family members, and staff are actively and meaningfully involved in planning and decision-making."

A new Partnerships in Dementia Care (PiDC) Alliance, co-led by Dupuis, brings together researchers from five universities and 50 stakeholder groups in dementia care at the regional, provincial, and national levels (i.e., persons with dementia, family members, staff, dementia care specialists and educators, specialists in knowledge translation, a range of community and long-term care social support service agencies, policy makers, and a multidisciplinary team of co-researchers and students).

Supported by a $1 million grant from the Social Sciences and Humanities Research Council of Canada's Community University Research Alliance, the team will develop resources and tools to facilitate an improved client-driven and relationship-centered approach to care for persons living with Alzheimer’s disease or a related dementia (ADRD).