Improving Access to Dementia Care Resources in Rural Communities

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Sep 23, 2020
by Mira Merchant
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Improving Access to Dementia Care Resources in Rural Communities

Salzburg Global Fellow Mary Pat Sullivan discusses her research and improving dementia care in remote and rural Canadian communities Mary Pat Sullivan at Salzburg Global Seminar in 2017 (Photo: Katrin Kerschbaumer)

Within the Canadian health care system, the gap in resource allocation between urban and rural communities is often far too wide. While urban areas see more significant investment in health care programs, initiatives and research, in many cases, rural communities have only basic health care infrastructure.

Salzburg Global Fellow Mary Pat Sullivan aims to close this gap, particularly for dementia care. A professor and researcher at Nipissing University, Sullivan's research examines dementia care resources available in remote and rural Canadian communities, as well as how best to provide resources needed to improve the quality of life for individuals with dementia and their families.

As Sullivan says, "In smaller communities, we simply don't have the specialists to help diagnose an individual… so people are having to leave their smaller communities and go to large urban centers to get a diagnosis... But when the individuals return home to their smaller communities, they're often just kind of left on their own to get on with it."

In December 2017, Sullivan attended the Salzburg Global program, Changing Minds: Innovations in Dementia Care and Dementia-Friendly Communities, which was held in partnership with the Dartmouth Institute for Health Policy and Clinical Practice, and the Mayo Clinic. Also attending the program were Fellows Sebastian Crutch of University College London (UCL), Stéphanie LeClair of Alzheimer Society Sudbury-Manitoulin North Bay & Districts and Paul Camic of Canterbury Christchurch University.

Following the program, the four Fellows received a grant of more than $6,000,000 funded by the Economic and Social Research Council and the National Institute for Health Research, enabling their institutions to jointly explore new forms of dementia support.

It has been almost three years that the group has been collaborating. Sullivan describes the relationships as "very, very positive," citing the group's many common interests and concerns in terms of how to address dementia care.

The COVID-19 pandemic has meant that the group's meetings, data collection and participant interviews must all take place entirely online, but this has not hindered progress. Sullivan says, "We're continuing to work together. We're continuing to progress our work and our ideas. So I can imagine the relationships continuing for some time."

Virtual health care is not a new concept for people in remote and rural communities. Often located hours from the nearest metropolitan areas, and without proper specialists in local hospitals, patients rely on virtual resources. As Sullivan says, "Sometimes they're feeling disconnected with our traditional services or just don't know where to turn. And so even pre-COVID, some people are very resourceful and have connected virtually, even before this study."

Sullivan describes the research resulting from the grant as an extension of work that has been done at UCL.

"The work [at UCL] specialize[s] on people with rarer forms of dementia, and often those are in individuals who are under the age of 65. So the work is an evolution of specifically focusing on how to best support people who aren't in the older age groups and looking at what their support needs are from really the beginning… in terms of people trying to get a diagnosis … and then from there on, how to support them and their families, because often someone with younger-onset [dementia] might still have… young children at home, often a care partner.

“And often what we're seeing is their parents, older parents … who are also stepping in to support them, but need support themselves as well. So that's essentially what the project is about: how to support people with rare or young-onset dementia."

Through her research, Sullivan hopes to raise greater awareness for the fact that that no two people with dementia have identical experiences, and those who are diagnosed with dementia earlier in life have unique needs, characteristics and challenges. She also hopes to ensure that services are equally accessible to younger dementia patients.

"These are … younger people with younger families, and the services [should be] equally responsive to supporting them with their needs… And [there is] great work we're doing with older people. And so if we could just replicate some of that success with younger people, then we're heading in the right direction."