Dementia Caregivers: Meeting Emotional and Practical Needs through Tailored Programming

The demands on the time, energy, and emotions of caregivers put them at risk for known and profoundly negative costs to their health and well-being. Reversing the social perception of caregivers as fully responsible for meeting the needs of people living with dementia is urgent.

Responding to this, the Sinai Health System’s Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and Training (“the Reitman Centre”) – led by its Medical Director, Dr. Joel Sadavoy, co-lead of CCNA’s Team 18 – is implementing the Enhancing Care for Ontario Care Partner Program (known as the “EC Program”). This province-wide component of the Ontario Dementia Strategy delivers practical skills-training and emotional support interventions to caregivers of people living with dementia. Their goal is to reach 15,000 Ontarians by the end of 2020 with programming that is feasible, sustainable, and clinically effective in the community. The research component of the EC program aims to provide evidence for clinical effectiveness and scalability of the model.

Programs offered include:

  • CARERS and Working CARERS programs – an 8-week small group (4-6 participants) psychoeducation and skills building program for dementia family caregivers;
  • Teach Program – a 4-week interactive group program (8-10 participants) addressing a key focus of caregiver skills training;
  • Tele-mindfulness based cognitive therapy program – an 8-week program delivered online, focused on teaching caregivers how to use their innate resources and internal abilities to manage stress and challenging emotions effectively;
  • The Dyad group – a 5-week arts-based activity group for caregivers and people with dementia; and
  • Individual interventions for caregivers who cannot engage in group interventions

The reality is that caregivers are often highly isolated and have difficulty prioritizing their own needs. They may also be homebound by their own frailty, live in a geographically remote area, or lack convenient transportation to access community support programs. For these reasons, the programs outlined above can be offered both face-to-face and in a live, online format, using the videoconferencing platform, ZOOM® which is compliant with the Personal Health Information Protection Act (PHIPA).

Online Resources

In addition to these online evidence-based programs, the Reitman Centre has developed apps tailored to dementia caregivers. One of them, Dementia Advisor, was launched in 2017 and is downloadable on tablets and smartphones by clicking here. The Reitman Centre also offers access to TYZE Connecting Care, which is a secure, private online network with features to share resources, events, and messages related to dementia care.

Next Steps

Representatives from Sinai Health System, The Nova Scotia Centre on Aging and the Knowledge Translation and Exchange program of CCNA at the Knowledge to Action caregiver workshop.
From left to right: Dr. Mary Chiu, Dr. Janice Keefe, Elizabeth Doyle, Sacha Nadeau and Dr. Gita Lakhanpal.

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 across systems. Specifically, the team is working with partners in Manitoba (University of Manitoba) and Nova Scotia (Mount Saint Vincent University’s Nova Scotia Centre on Aging) to assess whether these programs can be adapted to meet the needs of rural communities. To explore this, core Team 18 members hosted knowledge to action workshops (Manitoba April 4, Nova Scotia April 12, 2018), discussing applicability and paths for uptake.

To learn more, contact the CCNA’s Team 18: Effectiveness of Caregiver Intervention Team at Mary.Chiu@sinaihealthsystem.ca

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