Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Nov 1;18(1):355.
doi: 10.1186/s12888-018-1930-5.

Dementia severity at death: a register-based cohort study

Jesutofunmi Aworinde  1 , Nomi Werbeloff  1   2 , Gemma Lewis  1 , Gill Livingston  1   2 , Andrew Sommerlad  3   4
Affiliations

Dementia severity at death: a register-based cohort study

Jesutofunmi Aworinde et al. BMC Psychiatry. .

Abstract

Background: One third of older people are estimated to die with dementia, which is a principal cause of death in developed countries. While it is assumed that people die with severe dementia this is not based on evidence.

Methods: Cohort study using a large secondary mental healthcare database in North London, UK. We included people aged over 65 years, diagnosed with dementia between 2008 and 2016, who subsequently died. We estimated dementia severity using mini-mental state examination (MMSE) scores, adjusting for the time between last score and death using the average annual MMSE decline in the cohort (1.5 points/year). We explored the association of sociodemographic and clinical factors, including medication use, with estimated MMSE score at death using linear regression.

Results: In 1400 people dying with dementia, mean estimated MMSE at death was 15.3 (standard deviation 7.0). Of the cohort, 22.2% (95% confidence interval 20.1, 24.5) died with mild dementia; 50.4% (47.8, 53.0) moderate; and 27.4% (25.1, 29.8) with severe dementia. In fully adjusted models, more severe dementia at death was observed in women, Black, Asian and other ethnic minorities, agitated individuals, and those taking antipsychotic medication.

Conclusions: Only one quarter of people who die with dementia are at the severe stage of the illness. This finding informs clinical and public understanding of dementia prognosis. Provision of end-of-life services should account for this and healthcare professionals should be aware of high rates of mild and moderate dementia at end of life and consider how this affects clinical decision-making.

Keywords: Death; Dementia; Epidemiology; Health records; Mortality; Prognosis.

PubMed Disclaimer

Conflict of interest statement

Ethics approval and consent to participate

Ethics approval for the analysis of the CIFT CRIS database was obtained from the National Research Ethics Service Committee East of England—Cambridge Central (14/EE/0177).

This specific project was approved by the CIFT CRIS oversight committee following review of the study protocol.

Consent for publication

Not applicable.

Competing interests

All authors have completed the ICMJE uniform disclosure form at www.icmje.org and declare: GL2 was funded by a grant from the UK Department of Health, AS was funded by a fellowship from the Wellcome trust (200,163/Z/15/Z), and NW, GL1, GL2 and AS were supported by the University College London Hospitals National Institute of Health Research Biomedical Research Centre during the conduct of the submitted work. All authors declare no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Distribution of mini-mental state examination (MMSE) scores at death (n = 1400)
See this image and copyright information in PMC

References

    1. Statistics O. Deaths registered in England and Wales (series DR), 2011. Newport: Office for National Statistics; 2012.
    1. Heron MP. Deaths: leading causes for 2011. 2015.
    1. Sampson Elizabeth L., Burns Alistair, Richards Mike. Improving end-of-life care for people with dementia. British Journal of Psychiatry. 2011;199(05):357–359. doi: 10.1192/bjp.bp.111.097030. - DOI - PubMed
    1. Todd S, Barr S, Roberts M, Passmore AP. Survival in dementia and predictors of mortality: a review. Int J Geriatr Psychiatry. 2013;28(11):1109–1124. - PubMed
    1. Thuné-Boyle IC, Sampson EL, Jones L, King M, Lee DR, Blanchard MR. Challenges to improving end of life care of people with advanced dementia in the UK. Dementia. 2010;9(2):259–284. doi: 10.1177/1471301209354026. - DOI

Publication types