Results from Our ALS Community Survey

The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements. 

We want to extend our gratitude to the 1,000+ people who completed the survey. Highlights include:

  • Nearly three-quarters (72%) of people living with ALS require assistance with activities of daily living.

  • Sixty-three percent of caregivers report they provide more than 30 hours of care per week. Of the 61% of caregivers who work outside the home, 37% work more than 30 hours per week.

  • Over half (52%) the diagnoses of ALS have occurred within the past 2 years. Another quarter (26%) have been diagnosed within the past 3-5 years.

  • The majority (75%) of people living with ALS do not have dependent children.

  • Equipment loan programs (45%) are the most accessed program through the local ALS Association chapter.

  • The three most important challenges in dealing with the burdens associated with ALS are disease progression/changes in abilities (49%), finances/costs (10%), and family caregiver support/resources (8%).

  • For people living with ALS, Home Health Services (30%) was cited as the most important area the Association should be devoting more resources to. Caregiver programs/training (39%) was most important to caregivers.

  • More than half (58%) of people living with ALS attend an ALS Association supported clinic.

The full results may be viewed here. If you have any questions, please direct them to

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