The Dali Lama once remarked: “When you talk, you are only repeating what you already know. But if you listen, you may learn something new.” In that spirit, the national ALS Association undertook a community survey in early 2019 to hear from the community about programs and services that people consider important, reasons why people were not accessing some programs, major challenges, and issues around medications. In listening to the community about their realities, the ALS Association is better able to incorporate real world information in to care services planning activities and to inform priority setting, program outcomes, and program improvements.
The online survey was deployed through email and social media with over 1,000 people responding. Over 600 of the responses came from people with ALS, over 600 from either current or past caregivers to a person with ALS, and nearly 100 people who did not disclose their connection to ALS.
Here are the results for the national ALS Association blog:
• 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.
Perhaps these realities ring true to you, or perhaps they don’t. Everyone is unique, as is every case of ALS. Maybe you see yourself in some of these responses but not others. But by taking the time to listen to the community, the ALS Association hopes to learn something new that may make a difference in the lives of people with ALS and those who care for them. Along with the national ALS Association, we offer our sincerest thank you to the more than 1,000 people who took the time to share their experiences to make us all a little be wiser.