POP-PD
Research type
Research Study
Full title
Patterns of Perception in Parkinson's disease: Understanding the taboo of talking about dementia in Parkinson's
IRAS ID
302898
Contact name
Rimona Weil
Contact email
Sponsor organisation
Joint Research Office
Clinicaltrials.gov Identifier
Z6364106/2021/07/103 , UCL Data Protection Registration
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
Parkinson’s disease is a common, debilitating neurodegenerative disorder that causes slowness of movement, tremor and stiffness, as well as non-motor symptoms that can affect other body systems. In particular, dementia is common in Parkinson’s disease, affecting 50% of patients within 10 years of diagnosis. Despite it being common in Parkinson’s disease, patients often do not wish to open up conversations about dementia, before it begins; and clinicians can be reluctant to enquire about dementia as they worry about causing further distress.
This reluctance to discuss dementia means that it is often not discovered or dealt with until late in the progression of Parkinson’s disease dementia; it means that patients do not access treatments that can help them; it also means that patients are more nervous about taking part in research aimed at understanding Parkinson’s dementia. Many of these concerns are even greater within ethnic minority groups, who may have their own reasons to be uncomfortable discussing dementia in Parkinson’s disease.
We therefore aim to open up discussions about dementia with people with Parkinson’s at various stages and with their carers and families. We also aim to open these conversations within the Black African and Caribbean communities, which are often underrepresented in dementia and Parkinson’s research.
REC name
London - Chelsea Research Ethics Committee
REC reference
22/LO/0016
Date of REC Opinion
9 Mar 2022
REC opinion
Further Information Favourable Opinion