Objective: The aim of this study was to explore experiences of late stage Parkinson’s disease (PD) patients’ and their informal caregivers’ satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive.

Background: It the late stage of PD, there is an increasing disease burden not only for the patients but also for their informal caregivers and on the societal health and social care resources. This is the qualitative sequel of a recently published study [1] on satisfaction with care in late stage PD.

Method: This qualitative substudy was part of the Care of Late Stage Parkinsonism (CLaSP) project [2]; a collaboration between seven leading movement disorder centers in six European countries and the so far largest study on late stage PD. Individual semi-structured interviews according to a study specific interview guide were conducted with late stage PD patients (n = 11) and their informal caregivers (n = 9) in Sweden. Data were analysed through content analysis technique.

Results: The final analyses generated one main category and five subcategories. Main category: the patients’ and informal caregivers’ experiences of formal and informal care in late stage PD. Subcategories: available health care is important for managing symptoms and everyday life; the days are scheduled and make me dependent on others; wish to get adequate help when I need it; thoughts on future living and respite care; responsibility and loyalty for a functioning everyday life. Having regular contact with PD-specialized health care staff was perceived as important. Access to rehabilitation was further wished for. Maintaining autonomy was perceived important both when it comes to health/social care in the home and in a future residential care setting. Responsibility and loyalty between spouses and support from adult children enabled everyday life to carry on at home.

Conclusion: The results suggest that having access to PD specialized health care is important in late stage PD. This indicates that a multidisciplinary approach to the management of PD symptomatology is likely necessary in order to meet the different needs that exist in late stage PD. Non-PD specialized staff, e.g. in the municipality based home health care and in nursing homes should be given opportunities to obtain PD specific education and information. Efforts to enable this should be made from both PD specialized health care and the municipalities or the equivalent.

References: [1] Rosqvist K, Hagell P, Iwarsson S, Nilsson MH, Odin P. Satisfaction with Care in Late Stage Parkinson’s Disease. Parkinsons Dis. 2019 Jun 9;2019:2593547. [2] Balzer-Geldsetzer M, Ferreira J, Odin P, Bloem BR, Meissner WG, Lorenzl S, Wittenberg M, Dodel R, Schrag A. Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study. BMC Neurol. 2018 Nov 5;18(1):185.

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