Joan knew something wasn’t right when her husband Brian began having difficulties with his memory two years ago.
A meeting with a neurologist at Parkwood Institute confirmed her fears; he was diagnosed with Alzheimer’s at the age of 69. Now, as Brian navigates the early stages of the disease, Joan – his wife of over 30 years – has taken on the role of his primary care partner.
“My mom had Alzheimer’s, so I’m familiar with the disease, but how you deal with your spouse is different,” said Joan. “There’s only me with Brian.”
While many care partners navigate the early stages of the disease without professional assistance, Joan was fortunate. As one of 10 participants enrolled in a new McCormick Mobile feasibility study, Joan received personalized care partner education and training this past summer.
Karen Johnson, chief executive officer and Becky Clark, director at McCormick Care Group, were part of the team who developed the McCormick Mobile feasibility study. (Maggie MacLellan/Western Health Sciences)
The McCormick Mobile feasibility study was designed by McCormick Care Group – a charitable organization that oversees a long-term care home, dementia services and a research program – along with researchers from Western’s Faculty of Health Sciences.
The study, examining care partner support, provided six weeks of one-on-one, hands-on dementia education and training for care partners of individuals living with dementia. Participants had access to virtual meetings with the McCormick team, which remained available beyond the initial six-week study. They also received a guidebook and videos offering strategies and resources for care partners.
“Alzheimer’s is such a dehumanizing disease,” said Joan. “With the McCormick Mobile study, if I need it, I have people I can call. They can help me with advice. That’s a big deal.”
The partnership between Western’s Faculty of Health Sciences and McCormick Dementia Services, an arm of McCormick Care Group, represents a highly collaborative community approach that brought together a wide range of expertise – from academic and research insights to specialized knowledge in assisting those living with dementia.
The study also involved care partners in the design process, ensuring those with firsthand experience could guide the development of resources and support needed by care partners.
“There’s a real pressure on care partners to keep their person safe at home, but they don’t have the tools to necessarily do it the best way,” said Karen Johnson, chief executive officer at McCormick. “That’s what the McCormick Mobile study was about.”
Bringing dementia education home
One of the study’s biggest advantages was bringing services directly to clients: a highly skilled, interdisciplinary team from McCormick visited care partners and individuals living with dementia in their homes.
Those in-home visits included meetings with a social worker, recreation specialist, personal support worker, and registered practical nurse. They provided education and training in communication strategies, modifying activities, tips for personal care and awareness around medications and health concerns.
“Visiting care partners in their homes is so different from when a client visits our space. We saw the reality of their everyday situation, and it just fast-forwarded our ability to develop interventions that were really personalized and effective.” – Becky Clark, McCormick Care Group director who oversaw the study
Funded by the McCormick Care Foundation, the feasibility study included the care partners of 10 individuals living with dementia, whose conditions ranged from early to more advanced stages of the disease.
“There were some at the beginning of the caregiving journey. Their needs are going to be different compared to someone who is in the throes of caregiving,” said Marie Savundranayagam, a Western professor in the School of Health Studies and research co-lead on the McCormick Mobile study. “That was something identified in the feasibility study – we had such a diversity of caregiving situations and needs.”
Petro‑Canada CareMakers Foundation takes feasibility study to pilot project
Encouraged by the success of the feasibility study and the potential to do more, Savundranayagam and research co-lead Anna Garnett – a professor in Western’s School of Nursing – applied for additional funding from the Petro‑Canada CareMakers Foundation to expand to the next phase.
Established in 2020, the Petro‑Canada CareMakers Foundation supports family caregivers by providing grants to registered charitable organizations across Canada.
The Petro‑Canada CareMakers Foundation awarded a $150,000 grant to Western this fall to support the next phase of the McCormick Mobile study. The essential funding will allow the team to start a larger pilot study and determine what’s needed to scale the program.
“What’s emerging is the importance of soft skills or the interactions and behaviours of care partners when they’re caring for someone living with dementia,” said Garnett.
“This funding will allow us to better identify the needs of care partners and explore and integrate more aspects of those soft skills into the program.” – Anna Garnett, Western nursing professor
For Joan, learning communication strategies to help Brian during times of confusion was one of biggest takeaways from the study. Rather than feeling frustrated, she now has the skills to work with him and use language to ease his worries.
“If he does get upset about something, I feel better able to talk him out of the situation. I think those skills are really important,” said Joan.
‘A huge difference’
With the new funding from Petro‑Canada CareMakers Foundation, the McCormick Mobile team can now begin the pilot project with a long-term goal of rolling out the program to other organizations serving different regions. The hope is that communities across the province can use this model to support care partners.
“If other organizations are able to provide standardized care personalized to the care partner, I think we’ll really see an impact on the health care system as a whole,” said Johnson.
The McCormick Mobile team believes that broader impact will stem from providing care partners with the training and support they need to help someone living with dementia.
“Services and support should meet care partners where they’re at, both literally and figuratively,” said Savundranayagam.
“McCormick Mobile is having an impact because strategies and support are offered in their own homes. This allows the interprofessional care team to adapt the support they offer to align with the care partner’s current knowledge, emotional state, and circumstances.”
Joan has seen firsthand the impact McCormick Mobile has had on her confidence and ability to adapt.
“They gave me the skills to deal with specific situations and provided a direct line to McCormick, so when there’s an issue, I have someone to call. Knowing someone is in my corner has made a huge difference.”
For more information about McCormick Mobile, please visit https://mccormickcaregroup.ca/dementia-research.
