King's College London

There are currently 850,000 people living with dementia within the UK, with an estimation of 25,000 being from ethnic minority communities. Black, Asian, and minority ethnic populations are one of the fastest ageing communities, therefore being increasingly more susceptible to developing dementia.

However, ethnic communities remain underrepresented and underserved in both research and clinical trials. It is imperative to enhance participation in research to adequately assess and tailor services required by these groups. The UK has long been recognized as a multi-ethnic society and the diversity of the population continues to increase. Ethnicity is a multidimensional concept with numerous links to health.

With the current gap in information available to show how diverse ethnic communities and specific groups are supported in terms of dementia, the study aims to study their knowledge and awareness of dementia, whilst highlighting support and services that are employed by these groups.

Moreover, it will provide validated key information to these groups. The research will focus on the needs of various ethnic communities and specific faith groups, with the goal of developing better strategies to meet their care requirements.

The key questions that will be addressed during the study will include:

• To assess service use and support information available in relation to healthcare services.
• To assess research participation and awareness for ongoing local and nationwide opportunities.
• To assess barriers and facilitators for research participation and service use
• To assess dementia awareness and knowledge
• To assess health and wellbeing of ethnic communities and faith groups including quality of life, function, cognition and mental health.

We are inviting adults aged 40 and above across all ethnicities across the UK to take part in this study. Participants will need to use their own smartphones, tablets, or computers to complete online questionnaires.

Participation in the CARE Network study will include the completion of online surveys at baseline and then biannually for 10 years. Each survey can take approximately 15-20 minutes and can be completed in the comfort of your own home.

The CARE Network also holds regular public and patient involvement (PPI) meetings, to discuss upcoming research studies, dissemination, and engagement activities. If you are interested in being involved in this PPI group, please contact our CARE Network team at carenetwork@kcl.ac.uk to discuss more.

If you would like to know more information, please download the full Participant Information Sheet.

Ethics: The South Central - Berkshire Research Ethics Committee has approved this research (Reference Number: 25/SC/0083).

Access the Baseline Survey

Inclusion criteria:

1. Adults aged 40 years and over
2. People who are not experiencing memory problems; and people showing signs of memory concerns, mild cognitive impairment, and/or dementia
3. Have access to smartphones, tablets, or computers