A new study published in Advances in Therapy highlights the substantial impacts on employment and productivity faced by caregivers of individuals with Duchenne muscular dystrophy (DMD).
Researchers surveyed 106 U.S.-based caregivers, the majority of whom were mothers, about how caregiving responsibilities affect work participation, productivity and income. Nearly 90% of participants were caregivers for one individual with DMD, while 11% provided care for two individuals with the disease.
Caregivers reported spending an average of eight hours per day providing care, with time commitments rising to nearly ten hours daily for those caring for nonambulatory individuals. Very few received formal paid caregiving support, meaning most care was delivered informally by family members.
The results showed that caregiving had a substantial impact on employment and work. Caregivers experienced significant presenteeism (reduced effectiveness while working), as well as absenteeism. These effects were more pronounced among those providing care to those with advanced disease.
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The researchers found employment disruptions were also widespread. More than three-quarters of caregivers reported making at least one job-related change due to their caregiving responsibilities. These changes included reducing work hours, switching roles, taking extended leave, accepting lower-paying positions or leaving the workforce entirely.
Among those who altered their employment, caregivers lost an average annual income of $25,000, highlighting the economic consequences of caregiving in DMD.
“Together these findings highlight the balancing act DMD caregivers must execute between working and managing their caregiving responsibilities,” the study’s authors wrote.
The study emphasizes the need for greater recognition of caregiver burden and for policies, workplace accommodations and support services that enable caregivers to remain engaged in the workforce while meeting the complex needs associated with DMD.
The researchers call for additional studies to help shed light on the added burdens faced by families caring for more than one individual with DMD.
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