Implementation and evaluation of a social support program for ALS caregivers using peer mentors

Twelve former ALS caregivers (known as mentors) were recruited and trained to provided informational and emotional support to twelve current ALS caregivers. The caregivers were assessed at onset, and prospectively every two months throughout a 12 month period, using several scales, which assessed the amount of social support, self-efficacy, satisfaction with program and disease progression. Mentors completed a tracking sheet after each visit outlining the topics discussed. Exit interviews were conducted to give both the mentors and caregivers an opportunity to share their observations about the program. In general, caregiver satisfaction with the program was high. Results indicated those caregivers caring for patients with limb onset reported higher levels of social support, self-efficacy and satisfaction with the program than those caring for patients with bulbar onset.