Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease

Parkinson’s disease (PD) imposes substantial motor and non-motor burdens on people with PD and their informal carers (often spouses or children). Carers frequently experience psychological stress, depressive symptoms, sleep disruption, and diminished wellbeing, contributing to caregiver burden. As PD progresses, reliance on carers increases, intensifying burden. Literature suggests that access to tailored information, guidance, and social support may alleviate strain, yet many carers feel isolated and insufficiently supported. Peer support, delivered by those with similar lived experience, is a promising approach. The COVID-19 pandemic further amplified social isolation among people with PD and carers. A largely untapped resource is the experiential knowledge of former carers, which is often lost after bereavement. Drawing on evidence from dementia care where former carers acting as peers offered benefits to current carers and found the role rewarding themselves, this study set out to identify unmet needs of current carers of people with PD and to assess interest, willingness, and requirements of both current and former carers for peer-to-peer support that leverages former carers’ expertise.

Prior research documents high levels of caregiver burden in PD, with mental stress, loss of relationship quality, and progression-related dependency as key contributors. Support groups and peer-led interventions in PD and dementia have provided information, empathy, and reduced loneliness, improving confidence and coping. However, there is limited consensus on optimal delivery of peer programs for PD carers, and scarce research on integrating former carers as peer supporters in PD specifically. The pandemic underscored the importance of mitigating social isolation. Evidence from Alzheimer’s/dementia contexts suggests former carers can effectively provide peer support, reporting emotional rewards and improved coping, but PD-specific evidence is limited, motivating the present investigation.

Design: Cross-sectional questionnaire study conducted in the Netherlands (August–December 2020). Participants: Current and former informal carers of persons with PD able to complete Dutch questionnaires and willing to participate. Recruitment: (1) Dutch Parkinson’s Disease Association website/newsletter (58 completions/80 respondents); (2) ParkinsonNext invitations (40/75); (3) PRIME Parkinson Evaluation study cohort invitations (53/60; from 289 responders interested and eligible); (4) Authors’ social media (2 former carers). Measures: Two tailored questionnaires (for current and former carers) developed from prior dementia caregiver research, literature review, and stakeholder discussions (patient researcher, a current and a former carer). Sections included: (i) current support resources and unmet support needs (closed-ended), (ii) desired topics for support/advice (closed-ended; current carers), (iii) preferences for a peer-to-peer initiative linking current and former carers (content, setting, format, frequency, duration; mix of closed and open questions), (iv) socio-demographics and care-related characteristics. For current carers, perseverance time and subjective caregiver burden were included. Pre-testing with six current and one former carer informed refinements for clarity and completeness. Data handling and analysis: Responses captured in Castor EDC (electronic or paper entries transcribed). Descriptive statistics (means, SDs; counts, percentages) computed in SPSS 25. Open-ended responses analyzed via thematic analysis after open coding by one author and discussion with a second; themes were quantified into percentages for illustration. Ethics: The Radboud university medical center Ethical Board deemed the study exempt from further approval (file 2020-6304). Written informed consent obtained.

Sample: 141 current carers and 15 former carers completed questionnaires. Current carers: 68% women; mean age 68±7.8 years; 87% lived with the person with PD; 45% provided day-and-night care; perceived burden: 31.2% not/hardly, 34.0% somewhat, 23.4% rather heavily, 8.5% heavily, 2.8% overburdened. Former carers: 80% women; mean age 67.5±10.7; relationships: partner 53%, child 47%; 60% provided care >10 years; 60% day-and-night care; about one-third bereaved within the past year and one-third ≥5 years ago. Support and unmet needs: Many carers received support from healthcare professionals and social networks. Among current carers, 45% wanted additional support, 35% did not, 20% were unsure. Those wanting additional support were more often heavily/overburdened (55.6%) than those not wanting support (86% not/somewhat burdened). Recurrent needs included not feeling alone, needing practical information and advice, recognition and being heard, and guidance on self-care and balancing roles. Topics for additional support (current carers; Table 2) included: finding balance between caring for the person with PD and self-care (49.6%); recognizing signals/symptoms in the person with PD (44.0%); learning to communicate needs/wishes (41.8%); dealing with psychosocial consequences in PD (38.3%); dealing with a changing relationship (26.2%); self-care (25.5%); information on social/financial support (24.8%); stress management skills (23.4%); information about PD and treatment (19.9%); managing changing relations with the environment (19.9%); strategies for stress (19.1%); accepting the caregiver role (17.7%). Peer exchange interest and willingness: Slightly more than half of current carers wished to contact former carers to exchange experiences; among those wanting additional support, 62% wanted to share experiences with former carers. Main reasons: receiving practical advice, recognition, and emotional support. Some carers preferred existing supports, avoided future-focused discussions, or felt sufficiently informed. Former carers’ willingness to provide peer support was high (13/15; 86.7%); two were unwilling due to recent bereavement. Motivations (former carers): enabling others to benefit from their experience (92%), using their skills/knowledge (69%), addressing support gaps they had faced (31%). Design preferences: Both groups favored in-person or hybrid over online-only; individual contact or a mix of individual and group meetings; flexible, needs-based contact frequency; typical time investment 1–2 hours/week. Preferred settings included coffee meetings (current 78%; former 62%), walks (75%; 46%), support group meetings (68%; 77%), and lectures/workshops led by former carers (76%; 46%). Conditions for matching: baseline compatibility/commonality viewed as essential. Current carers prioritized reliability, empathy, listening, and communication skills; former carers emphasized that current carers should have comparable caregiving experiences.

Findings indicate substantial unmet support needs among current carers of people with PD despite existing supports, particularly around information, emotional support, recognition, and balancing caregiving with self-care. The strong willingness of former carers to share lived experience highlights a largely untapped resource to enhance support for current carers. With PD prevalence rising and limited specialist availability, integrating former carers as peers could address information deficits, provide empathy and recognition, and expand social networks that buffer caregiver strain and improve quality of life. Preferences for in-person or hybrid contact and individual or mixed-format meetings underscore the value of flexible, relationship-centered models; online options remain important when in-person contact is not feasible (e.g., pandemic restrictions or inability to leave the person with PD). Matching peers based on key commonalities and ensuring peer qualities such as reliability and empathetic communication are critical for program success. Overall, the study supports the feasibility and potential benefit of peer-to-peer initiatives incorporating former carers to meet carers’ diverse needs.

This study demonstrates considerable unmet support needs among current carers of people with PD and reveals strong willingness among former carers to act as peers. It outlines practical preferences for the design of peer-to-peer initiatives—favoring in-person or hybrid formats, individual or combined individual/group interactions, flexible frequency, and careful matching based on commonality—thereby providing actionable guidance for program development. Future research should pilot and evaluate peer programs that integrate former carers across diverse contexts, test online community models moderated by former carers, develop recruitment and retention strategies to stay in contact with carers post-bereavement, and deliberately include underrepresented groups (e.g., highly burdened carers, younger carers, and those supporting people with Young Onset PD). Cross-cultural studies are needed to understand how cultural values shape caregiver burden and support preferences and to refine programs for broader applicability.

The sample under-represented highly burdened carers and included few younger carers or non-spousal carers; support needs for these groups may be underestimated. The small number of former carers limited precision and generalizability. No measures of PD symptom severity were collected, precluding analyses of how specific symptoms influence caregiver burden and support needs. Participation may be biased toward individuals enthusiastic about peer exchange and those engaged with PD organizations. The study was conducted only in the Netherlands, limiting cross-cultural generalizability. Recruitment was constrained by COVID-19 and relied on online channels, potentially excluding less tech-savvy carers.