“We’re investigating key factors that affect the practical, psychological, and social lives of Canadian family members who are employed while also providing care to a senior with dementia at home. Our goal is to understand the challenges of this dual role and respond to those challenges through validated interventions that provide the specific skills and emotional resources family members need to balance their competing concerns.” Dr. Joel Sadavoy
The Canadian healthcare system has long treated family caregivers as sources of collateral information about the ‘actual patient.’ This perception and dynamic endures, despite the fact that it has been well established that caregivers are an at-risk population themselves from known and profoundly negative costs associated with being a working caregiver – i.e. someone who is employed while also caring for a senior, partner, and/or parenting.
Reversing the social perception of caregivers and how the healthcare system engages them is urgent, given the rapid increase in the number of employed family caregivers, as well as the demands on their time, energy, emotions, and well-being.
The social and economic implications for Canada require targeted policy responses to offset the billions that are being lost in productivity.
According to Drs. Joel Sadavoy and Mary Chiu, who are leading a team dedicated to this topic within the Canadian Consortium on Neurodegeneration in Aging (CCNA), these issues are just beginning to appear in the literature with respect to dementia. Advancing the conversation is essential to define the problems, consider effective interventions, and assist Canadian employers and policymakers in developing appropriate regulations, legislation, and services for employed caregivers.
To frame these discussions, Sadavoy and Chiu point to four evidence-informed pillars that are necessary to provide effective care to people living with dementia:
- Managing the practical issues associated with the disease;
- Knowledge of the disease and its symptoms;
- Specific skills to respond to dementia-related behaviors, including clear and effective communication; and
- Maintaining the caregiver’s emotional and psychological well-being.
In an effort to foster skills acquisition, education and emotional well-being, the team has developed the Reitman Centre Working CARERS Program. The program aims to improve each caregiver’s capacity and ability to function, examples of which include fostering problem-solving strategies and interpersonal skills in dementia care, and awareness of how to therapeutically manage the emotional challenges of providing care specific to the needs of each participant.
Already successful in an urban center in Ontario, the team is now assessing its fit in rural communities in Manitoba and Nova Scotia. Specifically, they’re asking the following research questions:
- What are the issues, challenges, and psychosocial experiences of employed family members providing dementia care in Canada?
- What is the clinical, economic, and social effectiveness of the Reitman Centre Working CARERS Program?
- How can the CARERS Program be most effectively scaled and adapted for employed caregivers in rural communities (given that they face unique challenges in accessing services and supports)?
To that end, the team has:
- Established a Canadian network of working partnerships with their co-investigators;
- Carried out focus groups and consulted community leaders on how to implement their program in rural areas;
- Recruited employed caregiver-participants and begun implementing the program;
- Disseminated a national survey and collected data on the characteristics of employed caregivers.
Dementia Caregiving in Rural Canadian Communities
The team has begun presenting and publishing the first results of this (read: one of three) projects focused on supporting family caregivers in rural communities. After carrying out in-depth interviews and focus groups – to understand the lived experience, needs, and expectations of employed caregivers in rural areas – the team adapted the clinical content of the CARERS program, as well as its mode of delivery. The program was then delivered through a live, web-based videoconferencing platform.
According to Chiu, post-intervention focus groups with participants provided insights into the benefits and impact of the adapted program on several levels.
“Practically speaking, the videoconferencing improved accessibility and reach. On a clinical level, communication skills-building improved caregivers’ self-perceived competence in initiating difficult discussions at work and at home. Systemically, stakeholders and working caregivers from two different provinces were made aware of provincial similarities and differences in resource offerings for caregivers. In the process, they became more engaged in grassroots efforts to ensure their peers are better served.”
These findings will guide the team as they continue to expand into other rural communities across Canada.
Chiu explains, “We anticipate that this research will deepen our understanding of the stresses of working caregivers dealing with dementia at home as compared to other caregivers, provide evidence for effective interventions to address these stress factors and deepen knowledge about remote caregivers and the barriers and facilitators in providing effective sustaining interventions.”
Next Steps
Using what they’ve learned, the team will work with their corporate and community partners to scale-up the program, enhance accessibility and use of effective interventions, and promote attitudinal and policy change.