Occupational participation and occupational therapy care in Myotonic Dystrophy: A narrative literature review
DOI:
https://doi.org/10.14295/bjs.v6i1.930Keywords:
myotonic dystrophy, occupational participation, occupational therapy, assistive technology, caregiversAbstract
Myotonic dystrophy, the most prevalent adult-onset muscular dystrophy, is multisystemic, linking progressive neuromuscular impairment and occupational restriction. Both types share myotonia, chronic fatigue, and executive dysfunction with apathy, but differ in weakness distribution and facial involvement. Over 9 years, participation declines in nutrition, fitness, personal care, mobility, community life, and recreation; 47% of DM1 patients do not work, 23% rate daily activities as affected, and 35% and 22% identify fatigue and muscle-locking as important. This review synthesises evidence within the Occupational Therapy Practice Framework: Domain and Process, Fourth Edition (PubMed, Scopus, Google Scholar; English, 2016–2026). Four participation-restriction drivers emerge: distal-to-proximal muscle weakness with grip myotonia; frontotemporal executive dysfunction and apathy; accelerating fatigue and daytime sleepiness; and progressive restrictions in community life, employment, and psychological functioning. 80% of disabled persons live in low- and middle-income countries, where high-income settings report 22 occupational therapists per 10,000. At the same time, 54 World Federation of Occupational Therapists member nations have fewer than one, and ratios as low as 0.001. OT rests on four pillars: COPM-based top-down evaluation; contextual adaptations (wearable ADL effect sizes 1.06 and 1.38; tailored smart-home solutions: 89% ADL improvement, 91% readiness for change at US$567 per participant; powered-wheelchair intervention transitioning 74.8% of 127 tasks to independent completion); energy conservation through pacing, planning, prioritising, and positioning; caregiver coaching anchored in the OPTIMISTIC trial's DM1-Activ-c endpoint. The disease trajectory is irreversible, but participation restrictions are modifiable; three priorities follow: longitudinal DM-specific outcome studies, DM-specific participation measures more sensitive than impairment tools, and scalable low-cost technology for resource-limited settings.
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