DECADE V1.0
Research type
Research Study
Full title
Supporting decision-making in Parkinson’s with cognitive impairment and Lewy body dementias: Developing a decision aid
IRAS ID
355581
Contact name
Kate Walters
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2025/11/129, UCL Data Protection
Duration of Study in the UK
1 years, 7 months, 31 days
Research summary
Cognitive changes are a common in Parkinson’s disease. Around half of all people with Parkinson’s develop dementia within ten years of diagnosis, and many experience milder or fluctuating memory and thinking problems earlier on. These changes can make it harder to understand and weigh up information, and therefore affect how people make decisions about their treatment and care. As thinking and communication become more difficult, family members often take on a greater role in supporting or making decisions. This can be emotionally demanding and leave carers feeling uncertain about what the person would want.
Although decision-making has been studied in dementia more broadly, very little research has explored the experiences of people with Parkinson’s-related cognitive impairment and their carers. As a result, the specific challenges faced by these families, and how best to support them, remain poorly understood.
This PhD study aims to understand how people with Parkinson’s disease with cognitive impairment, Parkinson’s disease dementia (PDD)and Dementia with Lewy bodies (DLB), alongside their informal carers, make important decisions, what challenges they encounter, and what kinds of support might help. The findings will be used to co-design a prototype decision aid, a tool intended to support people and their families in making more informed, values-based decisions.
The research will take place at University College London (UCL) and will involve qualitative interviews with up to 25 informal carers, up to 10 people living with Parkinson’s with cognitive impairment, PDD or DLB, and up to 15 health and social care professionals. Findings will then inform a series of co-design workshops, where carers, people with lived experience, and professionals will work together to develop and refine the decision aid.
This study is funded by the NIHR Three Schools Dementia Research programme.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
26/NE/0129
Date of REC Opinion
29 Jun 2026
REC opinion
Favourable Opinion