Ageing with neuromuscular disease: getting lost in transitions
Louise Abildgaard Møller1, Bente Martinsen2, Ulla Werlauff3
1Department of Neurology, Aarhus University Hospital, Aarhus N, Denmark.
Disability and Rehabilitation
|March 24, 2021
Summary
People aging with neuromuscular disease (NMD) face unique challenges navigating life transitions. Understanding these experiences is crucial for improving rehabilitation and support for individuals with NMD.
Area of Science:
- Neurology
- Gerontology
- Rehabilitation Medicine
Background:
- Neuromuscular diseases (NMDs) are chronic, progressive conditions.
- Increased life expectancy for NMD subtypes necessitates understanding adult and elderly experiences.
- Limited research exists on the lived experiences of individuals aging with NMD.
Purpose of the Study:
- To explore the lived experiences of people aging with neuromuscular disease (NMD).
Main Methods:
- Qualitative study utilizing a phenomenological-hermeneutic approach.
- Interviews conducted with fifteen individuals diagnosed with NMD.
- Reporting guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ).
Main Results:
- Four key themes emerged: paradox of dependency, 'no man's land' of aging, exercise challenges, and altered self-perception upon work cessation.
- Individuals experience a 'time-framed paradox' of striving for independence amidst increasing dependency.
- Aging with NMD involves navigating transitions, uncertainty, and balancing physical limitations with daily life.
Conclusions:
- Aging with NMD involves complex transitions and potential risks of feeling lost.
- Key factors influencing this life stage include physical changes, legislative shifts, social belonging, and energy management.
- Rehabilitation must adopt a life-course, biopsychosocial approach, focusing on transitions and individual experiences, not just chronological age.
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