Increasing Awareness in Caregivers for Individuals with Amyotrophic Lateral Sclerosis (ALS)

Abstract

Amyotrophic lateral sclerosis or also known as Lou Gehrig’s disease, is a type of motor neuron disease that can have life-changing effects on the individual that is diagnosed with the disease but also on the caregiver who aids with their loved one. The literature demonstrates the distressing experiences of caregivers as they go through the journey with their loved one. Literature also supports occupational therapy’s role in improving the quality of life and decreasing caregiver burden in caregivers. This doctoral capstone experience sought to identify the needs of a local association that works with the amyotrophic lateral sclerosis population and promote improvements in the quality of life to the individuals served by the site. Through a literature review, a needs assessment, and caregiver-specific surveys, the occupational needs of the site were discovered. 250 caregiver surveys were distributed to caregivers within the site’s database. 73 surveys were completed and returned to the site for analysis. Results were analyzed thoroughly and disseminated in a presentation to the care services team and clinical staff at the site. This project supports occupational therapy’s role in care for caregivers with a loved one diagnosed with amyotrophic lateral sclerosis.