Being a caregiver to someone with ALS

The ALS Society of Quebec knows that caring for someone diagnosed with a neurodegenerative disease is physically and emotionally demanding. From the outset, the Society’s goal has always been to help improve the quality of life of caregivers, as well as those diagnosed with ALS, by providing services to support, equip and refer our caregiver members as needed, thus reducing the risk for injury, exhaustion, depression, anxiety, stress. By doing so, we help you set the stage for a less complicated grieving process. We are an ally, and advocate, and a resourceful lifeline that ALS caregivers in Quebec can reply upon and trust.


First steps


The first step for someone recently diagnosed with ALS and their caregiver is to register at your local community service centre (CLSC) in order to meet with a healthcare professional who will guide you and your loved one toward appropriate services in your region/territory. Each CLSC offers various supports and services for caregivers, such as respite programs and homecare resources. To find the CLSC that covers services in your area, please visit the government website at the following link:


At times, you may be referred to an Integrated Health and Social Services Centre (CISSS) and Integrated University Health and Social Services Centres (CIUSSS) which also ensure accessibility, continuity and quality of services for people in their territory. To find your CISSS or your CIUSSS, consult:


Becoming a member of the ALS Society of Quebec allows caregivers to have access to a full range of personalized support and information that is often not available in the healthcare network. Signing up is easy and allows caregivers to stay up to date regarding information, activities and support groups.

Continuous improvement of our programs and services

Based on our team’s expertise, we are proud to have increased and diversified the following services:

  • Personalized and continued accompaniment and support that meets caregivers’ specific needs, at the outset of and throughout their journey with ALS
  • Information about the disease, referencing services, support and respite resources which are available in the healthcare system and through community organizations
  • Emotional support and follow-ups through in-person meetings at our offices, home visits, phone contacts and emails (which also breaks isolation and provides answers/ information)
  • Monthly presence at four important ALS clinics of the region in order to reach and support to caregivers: Montreal Neurological Institute, Notre-Dame Hospital, Maisonneuve-Rosemont Hospital and St-Jérôme Hospital
  • Information sessions, support groups, informal meetings, cocktails, appreciation days and social activities dedicated to caregivers and the bereaved.
  • Conferences, teleconferences and training