For Care Partners, About Care Partners, By Care Partners: Developing and testing the SPARC Online Programme
When we asked care partners of people with Parkinson's and cognitive impairment what they found most difficult, the answers were rarely about tremor or medication timetables. They described changes that are difficult to name and harder to prepare for:
· The long process of recognising cognitive changes and frustrations around getting a diagnosis;
· Gradually having to take on more of the ‘cognitive and emotional load’ as the person with Parkinson’s could no longer do tasks they had done previously; and
· The sense of loss when a familiar relationship begins to feel unfamiliar.
Care partners often found it hard to ask for help from others, feeling like it was their responsibility and not wanting to burden or worry friends and family. One care partner described it to us as “a lonely journey”.
Cognitive impairment is a common symptom in Parkinson’s: around one in five people already experience some thinking or memory changes at the point of diagnosis. Over time, most people with Parkinson’s rely on a care partner, usually a partner or relative, to help them with daily life. Caring for someone is an important role, but it can be demanding and stressful. The evidence indicates that care partners in this situation report higher burden and poorer well-being than those supporting people with Parkinson's without cognitive changes. Despite this, support designed specifically for care partners is scarce.
From iSupport to SPARC: adapting not starting over
iSupport, a freely available online programme for care partners of people with dementia, offers information and skills training relating to communication, decision-making, seeking support, and cognitive behavioural approaches. Parkinson’s cognitive impairment, however, is different to dementia, and care partners told us that this resource would not fit their specific needs.
We therefore sought permission from the programme's developers to adapt it, becoming the first team to adapt iSupport for care partners of people with something other than dementia. The result is SPARC — Supporting PARkinson's Care partners — an online programme built around four core aims:
· increasing care partners’ confidence in providing support and care;
· empowering care partners to attend to their physical and emotional needs;
· improving communication between the person with Parkinson’s and the care partners; and
· empowering care partners to seek support from others (e.g. friends and family, health professionals).
The adaptation followed the Person-Based Approach, which places the perspectives of those who will use the intervention at the heart of development. We conducted think-aloud interviews with 31 care partners, who shared their reactions to early drafts, and worked throughout with our lay advisory group, health and social care professionals, and the Parkinson's UK charity. Our lay advisory group shaped SPARC and our research at every level.
Testing the design before testing the intervention
Between July 2024 and February 2026, we ran a feasibility randomised controlled trial across the UK, recruiting care partners from geographically diverse regions and randomising them either to SPARC or to their usual support. We wanted to find out whether a definitive trial testing if SPARC improves outcomes for care partners could realistically be conducted. We successfully met all our criteria relating to trial recruitment, retention and engagement, while also learning lots of lessons about what we would do differently in the next trial.
What care partners made of SPARC
We interviewed 21 care partners about their views and experiences of using SPARC. Care partners told us that they found SPARC easy to understand and use, trustworthy and relatable. They valued that it was developed for carers, about carers, and by carers and how it focused on cognitive impairment from the outset. The stories and quotes from other care partners were mentioned repeatedly as helping them to normalise their own experiences and feel less alone. Additional reported benefits included improved confidence in caring, specifically dealing with challenging behaviour and communicating with the PwP, and helping them to manage their own well-being.
Taking our work to the Parkinson’s community
In May, we presented all of this at the World Parkinson Congress in Phoenix, and it was definitely worth the trip. Our posters were read by people who had lived every line of them and by clinicians and academics who asked exactly the questions we needed asking. This feedback has already worked its way into our thinking. We also came home with connections we could not have made anywhere else.
Susan, our Patient and Public Involvement (PPI) lead, presented a poster about her experience as a care partner and public contributor. It highlighted her contribution to the study and what she has gained personally from the role. It attracted care partners, people living with Parkinson's, and researchers interested in meaningful public involvement in research.
What’s next for SPARC?
Building on the lessons learned from our feasibility trial, we now plan to carry out a large clinical trial to test whether SPARC leads to improved care partner outcomes and is good value for money. We are determined to reach the care partners we did not reach this time: those taking part were mainly white, female and spouses. We need to make sure that any future research also includes those care partners who may be less likely to take part in research and that SPARC reaches those who need it most.
This work would not exist without the care partners who gave us their time: those who shared their feedback on early drafts, those who took part in the trial and shared their experiences so openly, and our lay advisory group, who shaped SPARC before it even had a name. We are grateful to them and hope they recognise their fingerprints on the final product.
You can find out more about the project and copies of the posters presented at the 7th World Parkinson Congress (WPC 2026) on our website.
This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Social Care Programme (NIHR204259). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Kate Greenwell, PhD, MSc, BSc, CPsychol Associate Professor and Health Psychologist works at the Primary Care Research Centre, University of Southampton, in UK. She presented this work as part of the WPC 2026 Poster Tour program. The blog above and poster were written and presented with her colleagues, Professor Annette Hand, DProf, MA, RGN Clinical Academic Professor of Nursing and Andrew McCarthy, MSc, BSc Assistant Professor of Health Economics both of whom are based at Northumbria University and Newcastle Upon Tyne, UK. They did this work with Susan Turton, BSc, PGCE (sec), a Retired teacher and Chair of Northumberland/Tyne & Wear Active Persons Branch of Parkinson’s UK who is also a Care partner of someone with Parkinson’s and Patient and Public Involvement lead.
Find the authors on social media
Kate Greenwell - www.linkedin.com/in/dr-kate-greenwell-b07a8940
Annette Hand - https://www.linkedin.com/in/annette-hand-aa6440134/
Susan Turton - www.linkedin.com/in/susan-turton-289ab83b4
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®