How people from minority groups with confusion symptoms seek help
Research type
Research Study
Full title
EQUAlity of opportunity for TimEly dementia Diagnosis (EQUATED): Stream 1: Lived experience of prodromal dementia
IRAS ID
323464
Contact name
Claudia Cooper
Contact email
Sponsor organisation
Queen Mary, University of London
Clinicaltrials.gov Identifier
154839 , EDGE number
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
Around 1 in 3 people living with dementia never receive a diagnosis. Receiving a timely diagnosis improves quality of life. People from diverse ethnic groups are on average diagnosed with dementia later and less accurately. This might be because people from different backgrounds report changes in their mind and body differently. They may be less likely to report memory problems and more likely to describe changes in mood or physical health.
We aim to understand more about the changes that people from diverse backgrounds describe before a dementia diagnosis, so we can improve people’s experiences in the lead up to receiving a diagnosis.
We will recruit participants from East London primary and secondary NHS and third sector organisations. We will qualitatively interview around 25 people who self-identify as from a minoritized ethnic or cultural group, with a dementia diagnosis, or dementia symptoms without a diagnosis; 15 family and 10 paid carers; and around ten healthcare professionals who diagnose dementia in their professional role.
Interview questions will explore early symptoms, how those experiencing them and their care networks responded, and their reflections on care received.
We will obtain informed consent from interviewees and from care recipients for interviews with family/paid carers about their care to take place. We will interview some family and paid carers for care recipients who lack capacity, if a personal or nominated consultee agrees.
We will record interviews using encrypted software and save them securely on a QM computer only for as long as needed to transcribe, after which the transcript will be anonymised. Access to recordings and interviews prior to anonymising will be restricted to the QMUL research team under the PIs direct supervision. We will look in depth at what participants tell us about experiences of diagnosis, consulting people with lived experience during this process.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
23/YH/0034
Date of REC Opinion
2 Mar 2023
REC opinion
Further Information Favourable Opinion