By Shannon Boklaschuk
A University of Saskatchewan (USask) researcher focused on increasing access to dementia care in the province said she felt “relieved” when she was awarded some significant funding last month.
Dr. Megan O’Connell (PhD), a faculty member and registered doctoral psychologist in the Department of Psychology in USask’s College of Arts and Science, is the principal investigator on a project titled “Rural and Remote Memory Clinic 2.0: An Integrated Approach to Accessible Dementia Care.”
On March 17, the Saskatchewan Health Research Foundation (SHRF) announced that the project was selected to receive a 2019-20 Sprout Grant, funded in partnership with the Saskatchewan Centre for Patient-Oriented Research (SCPOR).
“The Sprout Grant is a patient-oriented grant, and the genesis and design of this project is based on patient and family caregivers’ needs,” said O’Connell.
“Our team heard repeated personal stories detailing delays in receiving a dementia diagnosis. More importantly, my co-applicants—who described their heartbreaking experiences of delays in obtaining a dementia diagnosis for their loved one—were key to the success of this grant. Consequently, I felt a great deal of pressure and a heavy sense of responsibility for this grant to be successful—so getting this grant made me feel more relieved than anything.”
The Sprout Grant will provide $180,000 over two years for the Rural and Remote Memory Clinic 2.0 (RRMC2.0) project, which will offer coordinated access to dementia diagnosis and management strategies for families across the province. Technology will be used to mitigate geographic barriers for rural families.
Other aims of the RRMC2.0 are to triage patients to appropriate dementia services and supports to facilitate timely access and to implement a collaborative care method for diagnosis in primary care settings for typically presenting cases of dementia.
“Some stories from persons with lived experience detailed the barrier of getting one’s primary care provider to address concerns presented and the long wait to see a specialist for diagnosis,” said O’Connell. “The RRMC2.0 will address the gap to access a diagnosis described by our patients and families by facilitating self-referral, family referral and health-care provider referral.”
The RRMC2.0 will augment the specialist clinic known as the Rural and Remote Memory Clinic (RRMC), which was created in 2004 by Dr. Debra Morgan (PhD), from the Canadian Centre for Health and Safety in Agriculture (CCHSA), to address the dementia diagnosis gap. The clinic, which began as a project funded by the Canadian Institutes of Health Research (CIHR), is now a sustained provincial resource funded by Saskatchewan Health.
The interprofessional specialty RRMC includes comprehensive blood work, imaging, neurology exams, neuropsychology assessments, physical therapy and nutrition evaluation, clinical history, and separate collateral informant interviews for collaborative consensus diagnoses.
O’Connell, a clinical psychologist and a College of Arts and Science alumna (BA'98), leads the neuropsychology team. She and neurologist Dr. Andrew Kirk, head of the division of neurology in USask’s College of Medicine, work together to make a collaborative diagnosis and communicate the results to families.
Morgan, O’Connell, and Kirk are some of the investigators working with the interdisciplinary Rural Dementia Action Research (RaDAR) team, which is tackling the challenge of improving the delivery of rural dementia care across the continuum—from early detection and diagnosis to end-of-life care.
Research by the RaDAR team is inspired by the needs of Saskatchewan’s aging population. As such, the RaDAR and RRMC2.0 researchers work closely with the Alzheimer Society of Saskatchewan to coordinate approaches for raising awareness of dementia and the warning signs of dementia, and to act as a point of contact for self-referrals. Alzheimer Society of Saskatchewan CEO Joanne Bracken is also a RaDAR investigator.
O’Connell said the researchers led by Morgan and Dr. Julie Kosteniuk (PhD) are also working with the Saskatchewan Health Quality Council to get a good estimate of the current number of people living with dementia in the province. She said the number is “likely just shy of 20,000,” although that number is expected to increase as the population ages.
Improving access to dementia diagnosis and care is important for patients and their families. Frequently, the beginning of appropriate care and planning for a patient’s future hinges on receiving the initial diagnosis, said O’Connell.
“Dementia is underdiagnosed worldwide; one-fifth to one-half are diagnosed in high-income countries, and an estimated one-half are diagnosed in Canada. A diagnosis also helps with accessing appropriate post-diagnostic supports,” she said.
O’Connell said the COVID-19 pandemic is currently impacting the researchers’ ability to assist with dementia diagnoses in Saskatchewan. For example, the RRMC2.0 collaborative care model for diagnosis requires a complete medical evaluation—with comprehensive bloodwork and a physical exam. Since lab testing has currently been refocused due to the coronavirus, “we are going to have to wait until the pandemic cools down a bit,” said O’Connell.
“Cognitive impairment can occur for numerous reasons, so an up-to-date medical evaluation is required to rule out medical causes for the cognitive impairment,” she added.
O’Connell leads the rural team in the Canadian Consortium on Neurodegeneration in Aging. They developed the RRMC-interventions (RRMCi), which include a suite of videoconferenced psychological interventions for people living with dementia and their care partners. That work, too, has been affected by the pandemic, she said.
“We obtained ethics approval for province-wide recruitment for Telehealth-delivered sleep intervention and a cognitive rehabilitation intervention, but the suspension of outpatient clinics due to the coronavirus pandemic meant we had (to put) this work on hold,” she said. “We are looking into adapting the cognitive rehabilitation intervention for telephone versus videoconferenced delivery, though, to help encourage social inclusion during this time of physical distancing.”