Empowering People with Parkinson’s: Reframing Self-Management in Parkinson’s—A Critical Reflection of Current Practice

TL;DR

This paper discusses the challenges of self-management for Parkinson’s and proposes a new framework to better support people living with the condition.

Contribution

A new person-centered framework for self-management in Parkinson’s that emphasizes enablement and co-production.

Findings

Current self-management models for Parkinson’s have not shown sustained benefits due to conceptual and delivery limitations.

A new framework is proposed that focuses on personalized strategies and partnership with support networks.

The paper highlights the need for integrated care systems to support effective self-management in Parkinson’s.

Abstract

Background: Parkinson’s is among the fastest-growing neurological disorders, characterised by motor and non-motor symptoms that affect daily function and quality of life. With no cure, sustainable management strategies are essential. Self-management is a key component, enabling people with Parkinson’s to actively manage symptoms, treatment, and lifestyle, reflecting the wider long-term conditions (LTCs) approach to improving outcomes and well-being of people affected by these conditions. However, more than half of people living with Parkinson’s (PwP) report difficulties in engaging with self-management, often due to limited knowledge, confidence, or access to tailored interventions. Aims: This paper explores the theoretical underpinnings, key drivers, and current evidence base for self-management in Parkinson’s. It examines the relevance and limitations of applying LTC models to a progressive and highly individualized condition such as Parkinson’s. Despite global guideline recommendations, self-management support remains a significant unmet need. While self-management has the potential to improve adherence, symptom control, and activity levels, uncertainties remain about what constitutes effective, meaningful support. There is a need for a nuanced, person-centered approach embedded within integrated care systems. Conclusions: To date, self-management has not demonstrated sustained benefits for PwP, in part due to limitations in how current models are conceptualized and delivered. This paper highlights the challenges of existing approaches and proposes a new framework that enables and empowers PwP and their support networks to live well with Parkinson’s. Rooted in partnership, enablement, and co-production, the proposed model promotes the development of personalized toolkits of strategies that help individuals navigate and mitigate the challenges of life with Parkinson’s. This reframing has important implications for future research, clinical practice, and policy.

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