Objective: Develop a digital intervention to prevent or decrease the mental and physical health problems associated with caring and improve quality of life of carers of people with Parkinson’s disease (PD) and cognitive impairment (CI).

Background: Changes in cognition are a recognised complication of PD with significant clinical impact. As symptoms progress, people with PD require increasing support from an informal carer to help maintain quality of life. 69% of carers of people with moderate to advanced PD report moderate to severe levels of strain. Lack of adequate support leads to carer breakdown and avoidable hospital and social care costs. Despite their important role, there is a scarcity of support for carers of people with PD with CI.

Method: 1. Adaptation of the digital intervention ‘iSupport’, developed by the World Health Organization for dementia carers to meet the specific needs of carers of people with PD with CI (iSupport-PD) using the validated Person-Based Approach (PBA).

2. Conduct a 12-month feasibility randomised control trial (RCT) with a mixed methods process evaluation to explore the achievability of an RCT for iSupport-PD. 100 participants will be randomised to one of two groups: a) Control: Usual care, b) Intervention: Usual care plus access to iSupport-PD. Data, such as carer burden, quality of life, anxiety and depression will be collected for all participants at baseline, 3, 6 and 12 months. In the intervention group objective usage data will be collected to measure engagement.

Results: The adaptation process was guided by a stakeholder panel consisting of researchers, experts by experience, and health and care professionals. Qualitative think-aloud interviews with 10 carers (to date) have optimised the iSupport-PD content. Topics of the original iSupport were still relevant and new content was added to address the complexities of CI in PD (e.g., causes, interacting symptoms). Some aspects of iSupport were deemed patronising and swapped for more empathetic design features, terminology was also changed to promoted inclusivity and recognised ‘partnership’.

Conclusion: This study has demonstrated how the PBA can be applied to digital intervention adaptation. The next stage is to explore the feasibility of a RCT for iSupport-PD and the acceptability of the intervention. Ultimately, this resource could support carers of people with PD and CI globally.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-and-feasibility-trial-of-isupport-pd-a-digital-intervention-for-carers-of-people-with-parkinsons-and-cognitive-impairment/