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Examining changing working status and caregiver assistance in amyotrophic lateral sclerosis (ALS) using large-scale European databases as part of PRECISION-ALS
Part of Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Independent publisher
This describes who publishes a source, not how reliable it is.
Open source (opens in a new tab)Link checked August 2026
About this source
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration’s research review.
Where this source is used
Used in 3 places across 1 domain.
Questions
Planning
Finance & Insurance
- How can ALS/MND affect finances?
Adds context
“Caring for someone with ALS/MND often changes the carer's own paid work and reduces the household's income.”
Gives the scale of the unpaid care behind this. Informal care came mainly from spouses and children and rose from a median of 15 hours a week early on to 60 hours a week later in the illness. Its discussion states that caregiver burden restricts carers' ability to work full time and so affects their income and financial stability, citing other studies rather than measuring it here.
Informal care hours increased over time, and were primarily provided by spouses and children.
Abstract - How can ALS/MND affect finances?
Supports this
“Most people who are in paid work when ALS/MND starts leave the workforce, and it usually happens within about a year.”
Working status was recorded for 1,184 people across nine European ALS centres. Just under half were in paid employment before diagnosis and they left work quickly, with 83 percent no longer working 20 months after diagnosis. It measured leaving paid work rather than reducing hours.
Up to 45% of plwALS are working prior to diagnosis and their working status changes rapidly, taking an average of 12 months to leave the workforce.
Abstract - How might ALS/MND affect work and income, and what can help?
Supports this
“Most people in paid work when ALS/MND begins stop working within a year or two, and leaving work early carries a financial cost.”
Working status data for 1,184 people across nine European ALS centres. Just under half were in paid employment before diagnosis, the median time to leave the workforce was 12 months from symptom onset, and 83 percent were no longer working 20 months after diagnosis. Its discussion says leaving work early has a socioeconomic impact, but that the size of it is not yet measured.
Eighty-three percent of patients were no longer working 20 months post-diagnosis.
Abstract
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