TY - JOUR
T1 - Ethnicity and survival after a dementia diagnosis: a retrospective cohort study using electronic health record data
AU - Co, Melissa
AU - Mueller, Christoph
AU - Mayston, Rosie
AU - Das-Munshi, Jayati
AU - Prina, Matthew
N1 - Funding Information:
We thank Hitesh Shetty for assistance with extracting the data, Megan Pritchard for guidance and support using the Clinical Record Interactive Search database, and Anna Kolliakou for assistance checking the performance of the natural language processing algorithms for identifying dementia diagnoses in the database. This paper represents independent research funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. We would also like to acknowledge the Office for National Statistics (ONS) as the provider of the Mortality data; those who carried out the original collection and analysis of the data bear no responsibility for their further analysis or interpretation.
Funding Information:
We thank Hitesh Shetty for assistance with extracting the data, Megan Pritchard for guidance and support using the Clinical Record Interactive Search database, and Anna Kolliakou for assistance checking the performance of the natural language processing algorithms for identifying dementia diagnoses in the database. This paper represents independent research funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. We would also like to acknowledge the Office for National Statistics (ONS) as the provider of the Mortality data; those who carried out the original collection and analysis of the data bear no responsibility for their further analysis or interpretation.
Funding Information:
MP was partly funded by the MRC (MR/S028188/1, MR/T037423/1, and MR/T038500/1). JD is supported by the ESRC Centre for Society and Mental Health at King’s College London (ESRC Reference: ES/S012567/1) and by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London and the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the ESRC, NIHR, the Department of Health and Social Care, or King’s College London.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/3/29
Y1 - 2023/3/29
N2 - BACKGROUND: Individuals from minority ethnic groups in the UK are thought to be at higher risk of developing dementia while facing additional barriers to receiving timely care. However, few studies in the UK have examined if there are ethnic disparities in survival once individuals receive a dementia diagnosis. METHODS: We conducted a retrospective cohort study using electronic health record data of individuals diagnosed with dementia from a large secondary mental healthcare provider in London. Patients from Black African, Black Caribbean, South Asian, White British, and White Irish ethnic backgrounds were followed up for a 10-year period between 01 January 2008 and 31 December 2017. Data were linked to death certificate data from the Office of National Statistics to determine survival from dementia diagnosis. Standardised mortality ratios were calculated to estimate excess deaths in each ethnicity group as compared to the gender- and age-standardised population of England and Wales. We used Cox regression models to compare survival after dementia diagnosis across each ethnicity group. RESULTS: Mortality was elevated at least twofold across all ethnicity groups with dementia compared to the general population in England and Wales. Risk of death was lower in Black Caribbean, Black African, White Irish, and South Asian groups as compared to the White British population, even after adjusting for age, gender, neighbourhood-level deprivation, indicators of mental and physical comorbidities. Risk of death remained lower after additionally accounting for those who emigrated out of the cohort. CONCLUSIONS: While mortality in dementia is elevated across all ethnic groups as compared to the general population, reasons for longer survival in minority ethnic groups in the UK as compared to the White British group are unclear and merit further exploration. Implications of longer survival, including carer burden and costs, should be considered in policy and planning to ensure adequate support for families and carers of individuals with dementia.
AB - BACKGROUND: Individuals from minority ethnic groups in the UK are thought to be at higher risk of developing dementia while facing additional barriers to receiving timely care. However, few studies in the UK have examined if there are ethnic disparities in survival once individuals receive a dementia diagnosis. METHODS: We conducted a retrospective cohort study using electronic health record data of individuals diagnosed with dementia from a large secondary mental healthcare provider in London. Patients from Black African, Black Caribbean, South Asian, White British, and White Irish ethnic backgrounds were followed up for a 10-year period between 01 January 2008 and 31 December 2017. Data were linked to death certificate data from the Office of National Statistics to determine survival from dementia diagnosis. Standardised mortality ratios were calculated to estimate excess deaths in each ethnicity group as compared to the gender- and age-standardised population of England and Wales. We used Cox regression models to compare survival after dementia diagnosis across each ethnicity group. RESULTS: Mortality was elevated at least twofold across all ethnicity groups with dementia compared to the general population in England and Wales. Risk of death was lower in Black Caribbean, Black African, White Irish, and South Asian groups as compared to the White British population, even after adjusting for age, gender, neighbourhood-level deprivation, indicators of mental and physical comorbidities. Risk of death remained lower after additionally accounting for those who emigrated out of the cohort. CONCLUSIONS: While mortality in dementia is elevated across all ethnic groups as compared to the general population, reasons for longer survival in minority ethnic groups in the UK as compared to the White British group are unclear and merit further exploration. Implications of longer survival, including carer burden and costs, should be considered in policy and planning to ensure adequate support for families and carers of individuals with dementia.
UR - http://www.scopus.com/inward/record.url?scp=85151200949&partnerID=8YFLogxK
U2 - 10.1186/s13195-022-01135-z
DO - 10.1186/s13195-022-01135-z
M3 - Article
SN - 1758-9193
VL - 15
SP - 67
JO - Alzheimer's research & therapy
JF - Alzheimer's research & therapy
IS - 1
M1 - 67
ER -