Impact of apathy over the course of disease in amyotrophic lateral sclerosis

Radakovic, Ratko, Gray, Debbie, Trucco, Ana Paula, Bregola, Allan, Mioshi, Eneida, Copsey, Helen, Dick, David, Newton, Judith, Colville, Shuna, Pal, Suvankar, Chandran, Siddharthan, Simmons, Zachary and Abrahams, Sharon (2025) Impact of apathy over the course of disease in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. ISSN 2167-8421

Full text not available from this repository. (Request a copy)

Abstract

Objective: Apathy is a common syndrome in amyotrophic lateral sclerosis (ALS), particularly Initiation apathy (lack of motivation for self-generated thoughts and/or actions). The aim was to determine how apathy subtypes change over time, and their impact on individuals’ quality of life (QoL), caregiver-wellbeing and burden or strain. Methods: Forty-nine people living with ALS (pwALS) and their caregiver participated in interviews at three time-points (3-month intervals). They completed the Dimensional Apathy Scale (DAS), and assessments of depression, anxiety and emotional lability, cognitive-behavioral functioning and functional disability. PwALS QoL, caregiver burden or strain, caregiver-wellbeing and care-related QoL were measured. Results: At baseline, Initiation apathy was most common (38.8%, N = 19) followed by Emotional apathy (16.3%, N = 8). Lower caregiver-wellbeing was observed in Initiation apathy (p < 0.05) and Mixed-emotional apathy (p < 0.001) groups, where only Initiation apathy had higher caregiver burden or strain (p < 0.05) than those with no apathy. Over three visits (N = 31), there was an increase in Initiation apathy (p < 0.01) and Executive apathy (p < 0.05) over time. While controlling for functional disability, only increasing Emotional apathy was associated with increasing caregiver burden or strain (p < 0.05), decreasing caregiver-wellbeing (p < 0.001), and decreasing care-related QoL (p < 0.05). Conclusion: Initiation and Emotional apathy were variably associated with higher levels of caregiver burden or strain and decreased caregiver-wellbeing in ALS. As ALS progresses, Initiation and Executive apathy increased, while Emotional apathy has been shown to impact care-related QoL, caregiver-wellbeing and burden or strain. This has implications for understanding the progression of apathy subtypes and the interplay of caregiver-wellbeing, QoL, burden, or strain.

Item Type:	Article
Additional Information:	Data availability statement: Data available on request from the authors. Funding: This study was funded by Motor Neuron Disease Scotland.
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Related URLs:	https://www.tandfonline.com/doi/full/10....
Depositing User:	LivePure Connector
Date Deposited:	29 Apr 2025 15:33
Last Modified:	29 Apr 2025 15:33
URI:	https://ueaeprints.uea.ac.uk/id/eprint/99147
DOI:	10.1080/21678421.2025.2495020

Actions (login required)

View Item