Being a caregiver for someone living with ALS can be emotionally and physically exhausting, isolating, and overwhelming. Families need consistent guidance, resources, and support to manage both the disease and the strain it places on them.
ALS Canada’s Community Leads provide one-on-one guidance, support groups, information, and educational resources, including webinars. These programs have helped many caregivers, but some still need more tailored support to manage stress, anxiety, and grief.
“For years, we’ve identified a gap in mental health support for people living with ALS and their caregivers,” said Kim Barry, Vice-President of Community Services at ALS Canada. “Support groups help many people, but others need private, specialized therapy. Without sustained funding, we couldn’t offer the level of support we knew was needed.”
With $50,000 in funding from Rexall Care Network through its Caregiver Support Program, ALS Canada has been running a referral program for caregivers in Ontario, providing access to therapy and covering the cost of four sessions. Delivered by therapists with knowledge of ALS, these sessions are tailored to the unique demands of caregiving, helping families navigate the disease while supporting their own well-being.
“Since its launch in July, over 30 caregivers have actively participated, and two have completed the program,” said Barry. “The program initially focused on anticipatory grief but has also addressed family dynamics, complex relationships, and other personal challenges caregivers face.”
Feedback from therapists and participants has been positive, highlighting the program’s value. These sessions are for active caregivers, whether the person is newly diagnosed or has been living with ALS for years. They provide support beyond a group setting, offering practical tools and strategies to manage daily challenges. Depending on funding and community need, future sessions may also explore post-loss support through workshops.
“The ALS Canada Caregiver Support Program helped me in ways I didn’t even realize I needed. It allowed for conversations about things I hadn’t considered, or had tried not to consider, such as how I was going to cope with life after being a caregiver. It allowed me to feel more comfortable thinking about my future without guilt,” said a program participant actively caregiving for their spouse living with ALS. “I am sure that many caregivers live day to day while caring for a loved one with ALS and often push away thoughts about the future because of the fear and guilt that come with them. I think all caregivers should have access to this type of counseling and seriously consider engaging with the program.”
Corporate funding, such as the support from Rexall Care Network, is essential for addressing unmet needs in the ALS community. These partnerships allow ALS Canada to expand programs, respond to growing demand, and provide caregivers with the support they need.