Ageing with neuromuscular disease: getting lost in transitions

Abstract

Purpose

To explore the lived experiences of people ageing with neuromuscular disease (NMD).

Introduction

NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advances in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life continuing into adulthood and even old age; however, knowledge of people’s lived experiences with NMD is sparse.

Methods

A qualitative study using a phenomenological-hermeneutic approach inspired by Ricoeur was conducted. Fifteen persons with NMD were interviewed in 2018. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used.

Results

Four themes were identified: “A time-framed paradox of striving for independent dependency arises as age increases”, “Ageing means entering no man’s land”, “Exercising is caught between shrinking surplus of physical energy and demands of everyday life” and “Ending work life is a jumble of relief, concern and altered self-perception”.

Conclusion

The pathway to old age with NMD encompasses several transitions, all potentially including the risk of getting lost. Physical changes, changes in legislation, experiences of uncertainty regarding where one socially belongs and how to balance reduced physical strength in everyday life are indicated as key areas that affect ageing life with NMD.

Implications for rehabilitation

• Rehabilitation professionals should address ageing with NMD from a life course perspective and not with a singled minded focus on chronological age.

• A biopsychosocial focus is needed to prevent gaps and pave the pathway to old age with NMD.

• The experiences of multiple transitions when ageing with NMD should be in focus.

Keywords:

• Empirical research
• healthy aging
• hermeneutics
• personal narratives as topic
• transitional care
• qualitative research

Acknowledgements

The authors thank the participants for sharing their lives and stories. The assistance of personnel from the Department of Neurology at the University Hospital of Aarhus and the Rehabilitation Centre of Neuromuscular Disease in the recruitment phase is gratefully acknowledged.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was generously supported by the Department of Neurology at the University Hospital of Aarhus, The Danish Regions and the Danish Health Confederation, The charity foundation, Jaschafonden, The Vanføre foundation and Muskelsvindsfonden, the Danish neuromuscular patients’ association.