OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a rare, degenerative neuromuscular disease, leading to progressive loss of muscle function, and ultimately death. The debilitating nature of the condition negatively impacts the working and living arrangements of people with ALS (pALS) and their caregivers (cALS).

METHODS: The Adelphi ALS Disease Specific Programme (DSP™) is a cross-sectional survey of neurologists, pALS, and cALS in France, Germany, Italy, Spain, the UK, and the USA (Jul 2020–Mar 2021). Neurologists completed questionnaires on consulting pALS demographics, including employment status and living arrangements. These same pALS and their cALS, if applicable, were invited to complete questionnaires from their perspectives.

RESULTS: 142 neurologists reported data on 880 pALS; 135 pALS and 82 cALS provided self-reported data. 46% of pALS reported they had changed their working arrangements due to ALS, with 91% of these pALS having either reduced hours or stopping work entirely. Neurologists reported that changes in employment status occurred on average 16.1 months after symptom onset, and the most frequently cited reasons were impaired mobility (74%), increased muscle weakness (35%) and impaired communication (23%).

37% of cALS reported a change to their working arrangements to care for the pALS, with 50% of these cALS having either reduced hours or stopping work entirely. The support activities cALS most reported were “preparing meals/cooking” (72%), “shopping” (68%), and “cleaning/housework” (68%). A high frequency of home modifications was reported, and in 14% of cases, moving to a more ALS friendly house. ~50% of pALS and cALS agreed that ALS was a significant financial burden.

CONCLUSIONS: ALS-related impacts to working arrangements may lead to loss of income for ALS families even as changes to living arrangements become necessary. Substantial caregiver burden is common as responsibilities shift with disease progression. These impacts to work and daily living highlight the high level of unmet need in ALS.