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

Abstract

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.

An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease

“…5,8,9 The profile of caregivers in this study is consistent with the research literature 4 with many of them elderly and ill, providing care over an extended period of time. Caregivers experienced an array of emotions such as feelings of helplessness, guilt and feeling emotionally and mentally drained, as illustrated in other research.…”

Reformulating Psychological Difficulties in People with Parkinson’s Disease: The Potential of a Social Relational Approach to Disablism

“…For example, in some studies, participants described choosing to spend time with people who were in a similar position to them rather than people without PD or impairment (e.g., [88]). Other people lacking understanding or being uncomfortable with PD have been cited as a contributory factor to altered social contacts [89]. Indeed, people with PD have reported benefits from spending time with other people with PD in nonstigmatising contexts such as self-help and therapeutic groups (e.g., [90, 91]).…”

“…Indeed, people with PD have reported benefits from spending time with other people with PD in nonstigmatising contexts such as self-help and therapeutic groups (e.g., [90, 91]). Moreover, studies have found that people with PD and their families often avoid social situations due to fear of negative judgement by others [61, 81, 89, 92]. As such, negative and stigmatising public attitudes or action by others are considered to limit social opportunities for people with PD.…”

Development and evaluation of a dyadic intervention for elderly couples living with moderate-stage Parkinson disease

“…First, it focused on the transition related to the moderate stage of the disease among elderly couples. The intervention was developed around this transition, which is a pivotal stage where couples wish to be supported and to learn how to ask for, receive and deliver care, to negotiate jointly several demands and needs at times in conflict with one another, to come to terms with family, friends and healthcare professionals, and to plan their future together (Wressle, Engstrand, & Granérus, 2007). Transitions theory is congruent with the notions of the trajectory of degenerative diseases that affect elderly couples and the timing of the intervention.…”