Interpersonal associations in mental health outcomes of people living with ALS, caregivers, and dyads: Implications for the role of clinicians

There is a significant mental health burden among individuals with amyotrophic lateral sclerosis (ALS) and their caregivers. However, limited literature exists on how ALS caregiver-recipient dyad relationships may affect mental health outcomes. The Care Interactions in ALS study is a mixed-method project exploring people with ALS and their caregivers’ care experiences. Quantitative analysis analyzed survey responses from 33 linked caregivers and care recipient pairs. Dyad data included depressive symptoms (Patient Health Questionnaire-9 (PHQ-9)), mental health (Short Form-20 (SF-20)), ALS symptom progression (Rasch-built Overall ALS Disability Scale (ROADS)), and perceived emotional support (Perceived Responsiveness Scale). 43 semi-structured interviews and six focus groups were conducted. Deductive thematic analysis of qualitative data was performed. showed that caregiver-care recipient relationship quality may mitigate mental health risk for ALS care recipients; analysis found that the more a care recipient can count on their caregiver for support, the less likely they are to experience depression (r=-.24, p=.04). Caregiver and care recipient mental health scores were significantly correlated (r=.393, p=.024), demonstrating a relationship between caregiver and care recipient mental health experiences. Overarching qualitative themes of ‘Factors Impacting Mental Health’, ‘Perceptions of Mental Health’, and ‘Mental Health Interventions’ were discussed in focus groups and interviews. Participants expressed mixed attitudes toward mental health and services. There is a need for mental health support tailored to the needs of individuals with ALS and their caregivers. Findings from this may inform clinicians of how to best support the mental health of people living with ALS and their caregivers. • Mental health outcomes of people with ALS and their caregivers are closely interconnected within caregiver-care recipient dyads. • Higher perceived emotional support from caregivers is associated with lower depressive symptoms among people with ALS. • Greater ALS symptom burden is linked to worse mental health outcomes for care recipients. • Findings reveal various culturally shaped attitudes about mental health care and barriers to ALS-informed services. • Clinicians should adopt dyadic, flexible, strengths-based, and culturally responsive approaches to mental health support in ALS care.