Older Swedish women's experiences of living with symptoms related to Parkinson's disease

Authors

  • Marianne Caap-Ahlgren BA RN,

  • Lena Lannerheim PhD RN,

    1. Sociologist, Gerontology Research Centre, Lund, Sweden
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  • Ove Dehlin MD PhD

    1. Department of Community Medicine, University of Lund, Lund, Sweden, and Professor of Geriatric Medicine, Department of Community Medicine, Malmö University Hospital, Malmö, Sweden
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Marianne Caap-Ahlgren, Department of Community Medicine, Malmö University Hospital, 20502 Malmö, Sweden. E-mail: marianne.caap-ahlgren@smi.mas.lu.se

Abstract

Background.  Approximately 1% of the population over 65 years of age is afflicted with Parkinson's disease (PD). The number of patients with the disease will most probably increase in the future because of the increased longevity of the population. There is no curative therapy for the disease.

Aim.  To explore women's experiences of living with symptoms related to PD, and to analyse how the symptoms influence their quality of life.

Methods.  A phenomenological-hermeneutic method, inspired by the philosophy of Ricoeur was used. The study focuses on eight women between 63 and 80 years of age who have been diagnosed with PD for 5–15 years. The women all lived at home, were moderately to severely disabled and cognitively intact.

Findings.  In the analysis, four themes emerged: (1) wish for a stable body image; (2) wish to keep traditional female competence; (3) need to feel accepted for the person she is; and (4) perceived stigmatization. All themes showed that trying to adapt to unpredictable fluctuations in physical and psychosocial competence has a great impact on the females' lives. It became clear that fluctuations in competence and not knowing when to expect impaired mobility are connected with frustration and social withdrawal.

Conclusion.  The experience of PD from eight disabled female patients has revealed that the disease affects quality of life not only for the person who has it, but also for her family. Thus, it is equally urgent that patients, relatives, nurses and caregivers gain better knowledge and more understanding of PD, so as to ease the impact of the disease on the patient's daily life.

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