Title: Diagnosis and management of dementia in primary care in Black Asian and Minority Ethnic (BAME) groups: an exploratory study
Funder: Department of Health and Social Care

Abstract: Background Dementia is the commonest cause of death in England and Wales. Due to demographic factors, it will increasingly affect Black Asian and Minority Ethnic (BAME) groups, with a seven fold increase in prevalence by 2051. Diagnosis and management of dementia in BAME groups can be challenging because of cultural factors, language difficulties and the lack of effective and culturally sensitive screening tools in general practice. In Leicester (where the research will be conducted) and other places with high BAME populations there is concern that the number of cases from BAME groups on dementia registers is lower than expected. Aims 1: To quantify variation between the White British population and BAME groups in the diagnosis and management of dementia in primary care 2: To explore the barriers and enablers to diagnosing and managing dementia in BAME groups in primary care as perceived by GPs, practice nurses, patients and their families Plan Aim 1 Firstly we will examine the recorded prevalence of dementia and how this varies between ethnic groups at practice and CCG levels, using collated anonymised patient level data from all general practices. Descriptive statistics, including dementia prevalence rates for White British, Asian/Asian British and Black/Black British by age band will be generated and compared. A multi-level logistic regression model will be used with adjustment for covariates such as age, sex and deprivation. Secondly, we will examine the use of cognitive screening tools in general practice and how this differs according to ethnicity at practice and CCG levels. Thirdly, we will use data routinely collected by Leicestershire Partnership NHS Trust, the provider of specialist dementia services, to compare referral rates to memory clinics and other dementia services and how this differs according to ethnicity at practice and CCG levels. We will also examine the severity of dementia at presentation to specialist services and whether this differs according to ethnicity. Lastly, we will examine the prescribing of drugs to treat dementia by specialist services and whether this differs according to ethnicity. Aim 2 Using qualitative methods, we aim; firstly to understand what prompts GPs and practice nurses to consider a diagnosis of dementia and whether this differs according to ethnicity and/or proficiency in English language; secondly to explore challenges perceived by GPs in assessing cognition in BAME groups and in people who are not proficient in English, and finally to understand how GPs decide to refer to memory clinics and services to support dementia and how this may differ according to ethnic group. We will use results from the GP database study to select practices for the qualitative study, with the aim of recruiting six practice with a range of ascertainment rates for dementia in BAME groups. In each practice we will conduct a focus group comprising 6-8 practitioners. We also aim to understand the experience and views of people from BAME groups with dementia and their carers/families from initial presentation to referral specialist mental health services, if applicable. To achieve this, we will ask each of the six participating practices to identify patients from BAME groups who were diagnosed with dementia in the preceding six months. We will then interview a diverse sample of up to 30 patients and their family members/carers. Potential Benefits We will use our findings to provide recommendations to members of the public from BAME groups and primary care professionals. We then hope to develop an intervention package to assist primary care in diagnosing dementia in BAME groups. This programme of work will have the potential to reduce dementia related morbidity in BAME groups, increase quality of life and reduce need for social care.

Lay abstract: In Black Asian and Minority Ethnic (BAME) groups in the UK, the number of cases of dementia is expected to rise seven fold by 2051. As GPs are usually the first professional consulted, their role is pivotal in assessing people who may have this condition. However there is evidence they find this more difficult with patients from some BAME groups because of cultural and language issues. Our study will be based in Leicester, where BAME groups comprise about half the population. Firstly we will assess the extent of the problem by using data from all 59 general practices in the city. We will calculate the proportion of people with dementia recorded and compare this to expected rates in three broad ethnic groups (White, Asian/Asian British, Black/Black British). We will also examine any differences in the use of screening tools for dementia and referral rates to specialists, and examine differences in severity of dementia at presentation and the use of medication to slow the progression of Alzheimer s disease. To better understand the problem from professional and patient perspectives, we will recruit six practices from ethnically mixed parts of Leicester, with high and low identification and referral rates. In each practice we will conduct focus groups and interviews with practice nurses and GPs to explore barriers and enablers in diagnosing dementia in BAME groups. We will also interview a total of up to 30 patients and their family members/carers in participating practices who have recently been diagnosed with dementia, to understand their perspectives on how the diagnosis was made and their experience of the process. With input from PPI colleagues, we will use our findings to produce recommendations for good practice and seek further funding to develop an intervention to improve the primary care diagnosis and management of dementia in BAME groups.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL