Community Ageing Research across Ethnicities - CARE Network
Research type
Research Study
Full title
Community Ageing Research across Ethnicities - CARE Network
IRAS ID
304983
Contact name
Zunera Khan
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
N/a, N/a
Duration of Study in the UK
20 years, 0 months, 1 days
Research summary
There are 25,000 people with dementia from Black, Asian, and minority ethnic (BAME) groups in England and Wales, and this number is expected to double to 50,000 by 2026, rising to over 172,000 by 2051 (Dementia Statistics Hub, 2019). Despite this, individuals from BAME communities often face delayed diagnoses and lack adequate support due to specific risk factors and treatment needs. Their underrepresentation in clinical trials and studies results in a lack of diverse data, which limits the generalizability of research findings (Moriarty et al., 2011). This lack of diversity presents both ethical and medical challenges (Caplan, 2017). Furthermore, individuals of Black heritage are at a higher risk of developing dementia compared to other UK populations, yet research on improving dementia care in BAME communities remains limited.
Cost-effective research strategies are needed to increase participation from these underrepresented groups. This proposal aims to utilize existing resources to create an initial dataset and proof of concept for a model that could be expanded nationally.
The Community Ageing Research Across Ethnicities Network (CARE Network), previously the E-BAME study, was launched by King's College London in 2020 with funding from the National Institute for Health and Care Research (NIHR). It focuses on mental health, quality of life, and coping mechanisms in BAME populations post-pandemic, with ongoing longitudinal data collection (currently n = 397).
The study will investigate:
1. Use of healthcare services and available information.
2. Awareness and participation in research.
3. Barriers and enablers to participation.
4. Knowledge about dementia.
5. Overall health, quality of life, mental health, and brain function.
Participants aged 40 years and above, residing in the UK, are eligible to join, including those without memory concerns as well as individuals showing signs of memory problems, mild cognitive impairment, or dementia.Focus groups will also be held throughout the study to gather in-depth insights from participants regarding their care needs, barriers to research participation, and how the study has addressed these needs. These focus groups will be conducted bi-annually online using use their own smartphones, tablets, or computers.
Participants will need to use their own smartphones, tablets, or computers to complete online questionnaires and take part in the study. The study will use secure platforms for data collection, such as JISC and Qualtrics, ensuring participants’ information remains confidential. Jisc is a UK-based platform offering secure online surveys for education and research. Qualtrics is a leading survey tool used to design and analyze surveys, ensuring secure data collection.
The CARE Network aims to build a network and develop an educational toolkit to enhance dementia awareness and service use in minority communities. This toolkit will provide validated information on dementia research, types of dementia, and symptomology, improving both engagement and retention. Key goals include raising awareness of memory services, increasing understanding of research participation, and offering educational resources about dementia and its diagnosis.
The study is supported by South London and Maudsley NHS Foundation Trust, with King’s College London as the sponsor. More information can be obtained by contacting the research team via email at carenetwork@kcl.ac.uk.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
25/SC/0083
Date of REC Opinion
3 Apr 2025
REC opinion
Further Information Favourable Opinion