ABSTRACT

Purpose: This capstone project addresses caregivers to patients diagnosed with Amyotrophic Lateral Sclerosis (ALS)’s overwhelming need for support. The purpose of this project is to fulfill this need by creating an easy-to-access website specific to ALS caregivers that provides comprehensive online educational materials and training videos.

Methods: An extensive literature review and needs assessment were used to identify significant gaps in current caregiver support efforts to guide the project’s focus and determine the main topics of the website. This project also received guidance from an occupational therapist at the Emory ALS Clinic in Atlanta, Georgia to ensure the content’s relevance and accuracy.

Output: The final website (www.knowals.com) provides instructional materials on three identified topics: techniques for safely performing transfers, the commonly used assistive devices in ALS care, and how to manage the financial costs of an ALS diagnosis. Each topic of the website, including video demonstrations and written guides, was developed to increase caregiver confidence and competence.

Impact: The launch of website is expected to have a profoundly positive impact on the ALS caregiving community. The website offers both immediate and practical support to caregivers by granting easy access to valuable caregiving information and resources. The website also aims to reduce caregiver stress and improve the quality of life for those affected by ALS. In the long term, it seeks to establish itself as a pillar in the ALS community that reflects the latest and best practices in ALS care.