Amyotrophic Lateral Sclerosis & Frontotemporal Impairment: A Qualitative Study of the Caregiving Experience
Date of Submission
Doctor of Psychology (PsyD)
Robert A DiTomasso, PhD, ABPP
Stephanie L. Felgoise, PhD, ABPP
Donald P. Masey, PsyD
Brian J. Balin, PhD
Living with amyotrophic lateral sclerosis (ALS) is a complex and difficult experience that necessitates numerous lifestyle changes for the patient and caregiver. Although ALS was previously regarded as a disease that primarily affects the motor system and spares non-motor functions, it is now recognized that a sizable proportion of the ALS population demonstrates frontotemporal impairment (ALS+FTI), with a subset of the population meeting criteria for frontotemporal dementia. Clinically, ALS and FTI differ in many respects; however, both diseases are progressive and necessitate dependence on caregivers for assistance with activities of daily living and beyond. Although the relationship between ALS and FTI has received empirical attention, the experience of the caregiver remains largely unexplored. The aim of this qualitative study was to explore and describe caregivers’ thoughts, feelings, behaviors, practical daily challenges, and rewards in caring for persons with ALS+FTI. Four female spousal caregivers participated in semi-structured interviews; they also completed self-report measures to assess quality of life, level of care, and FTI symptoms exhibited by the care recipients. Findings indicated that although each caregiver faced her own set of unique challenges, there were commonalities across narratives. Three major themes were identified: witnessing the effects of ALS+FTI, the impact of the caregiving experience, and coping with life as a caregiver. Findings were interpreted within the context of the existing caregiving literature and suggestions for improving FTI assessment within the ALS population were provided.
Dube, Michelle, "Amyotrophic Lateral Sclerosis & Frontotemporal Impairment: A Qualitative Study of the Caregiving Experience" (2017). PCOM Psychology Dissertations. 434.