Living with Parkinson's disease: Elderly patients' and relatives' perspective on daily living

Background/aim: Parkinson's disease is a progressive neurodegenerative disorder resulting in significant disability. We examined how Parkinson's disease affects daily living from the perspective of both patients and relatives. Methods: Qualitative interviews were performed with seven patients with Parkinson's disease and nine relatives from families other than those of the interviewed patients. Patients and relatives were recruited from an outpatient geriatric unit at a university hospital in Sweden. The interviews were transcribed and analysed qualitatively. Results: A conceptual framework encompassing aggravating factors, consequences in daily living and facilitating factors is presented. Patients perceived activity restrictions, changed habits, decreased socialisation and anxiety. Relatives reported changed roles and habits, decreased socialisation, strain and anxiety about the future. Facilitating factors included accessibility, strategies and psychological support for both patients and relatives. Conclusions: The results show that Parkinson's disease affects daily living not only for patients but also for relatives. They need to be seen, heard and supported in this burden. Services must be adapted to the needs of both patients and relatives with accessibility to health-care facilities with deep knowledge about the disease and its consequences. The identified factors are areas of concern in occupational therapy.