Objective: To describe the personal experiences and perceptions of caregivers of people diagnosed with Parkinson’s disease (PD) who are either in the advanced stages of the disease or have passed away.

Background: Palliative care is receiving a growing interest in PD worldwide. In France, the APO-PALLIA project, started in 2018, highlighted several practice gaps. Little is known, however, about the perceptions, knowledge or experience of caregivers of PD patients. Understanding the current situation is critical to identify levers for action and improve patients’ access to palliative care resources.

Method: The questionnaires were distributed and completed online and/or on paper from July 29 to September 30, 2024. 3, 094 caregivers of people with PD responded, but analysis was carried out on the 2,496 caregivers (78% females, mean age 66 years old) of PD patients in the advanced stages of the disease or who passed away (29%). Most of caregivers were the patient’s spouse (64%) or children (29%).

Results: 28% of caregivers feel that PD is not adequately considered in the support provided by the professionals around them. The lack of consideration given to the patient’s psychological state, the lack of knowledge of PD specificities (symptoms and treatments), and lack of care coordination are particularly highlighted. Neurological follow-up is maintained in most cases (90%) but declines in the last stages of life (75%), particularly for institutionalized patients.  Care and support appear to be much less qualitative for people living in institutions (nursing homes), and particularly regarding treatment adherence. Most notably, treatment administered at random or interrupted in 25% of cases, or only partially maintained in 40%. End-of-life care is still not sufficiently anticipated, even in the most advanced stages of the disease, since just over a quarter of caregivers have heard of the existence of advance directives for palliative and end-of-life care. 25% who had heard about them felt it was already too late.

Conclusion: Caregivers of people with PD seem to have difficulties in certain end-of-life situations, particularly when patients are institutionalized. Training professionals on PD care specificities, improving care coordination and access to early palliative care appear to be priorities.

References: The authors thank all of the participants, as well as Viavoice for carrying out the analysis

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MDS Abstracts - https://www.mdsabstracts.org/abstract/end-of-life-care-management-in-parkinsons-disease-a-national-survey-of-caregiverss-own-experiences-and-perceptions/