Professionals
Why is this research important?
In the UK, the number of people with Parkinson’s disease (PD) will reach over 168,000 by 2025. At diagnosis, 19% of people with Parkinson’s will have cognitive impairment, with symptoms including memory loss, difficulty concentrating and anxiety. Up to 78% of people with Parkinson’s will develop Parkinson’s dementia with symptoms such as confusion, hallucinations, and depression. Most people with Parkinson’s will require support from an informal (unpaid) carer. The caring role can increase stress and have a negative impact on the carers’ quality of life. It is common for carers to neglect their own needs and health. Support for carers is very limited and variable across the UK. Making sure carers maintain their physical and mental health is crucial.
The World Health Organization has developed iSupport, a programme for carers of people with dementia. It is available online, or as a paper booklet, and provides information and training for carers to take care of themselves, provide everyday care and deal with complex behaviour changes. iSupport is a useful digital intervention, but it does not currently meet the specific needs of carers of people with Parkinson’s with cognitive impairment.
What are the aims of the iSupport-PD study?
The aims of our 30-month study are to:
- Adapt iSupport to meet the specific needs of carers of people with Parkinson’s with cognitive impairment; and
- Explore the feasibility of a randomised controlled trial (RCT) for iSupport-PD and the acceptability of the intervention.
Our objectives are:
- To assess the feasibility of the RCT design, including recruitment, intervention engagement, retention at follow-up (6 and 12 months), and outcome measures.
- To conduct a process evaluation to explore intervention and trial acceptability.
Developing and evaluating iSupport-PD
Using the Person-Based Approach, we will conduct systematic intervention development of iSupport-PD. We will conduct interviews with carers of people with PD with cognitive impairment and consult key stakeholders to gain feedback on iSupport. Modifications will be based on this feedback.
Carers of people with Parkinson’s and cognitive impairment (n=100) will be recruited to a randomised controlled trial from NHS clinics, Parkinson’s UK and social media platforms. Carers will be randomised 1:1 to iSupport-PD or support as usual.
The primary outcome will be the feasibility of the trial design, including recruitment and follow-up (3,6 and 12 months) rates and intervention engagement.
Secondary outcomes will include the effectiveness of recruitment strategies, formal and informal care used, social care change and quality of life and well-being.
A mixed-methods process evaluation will explore engagement with iSupport-PD.