Official Statistics

Statistical commentary: dementia profile, December 2024 update

Updated 3 December 2024

Applies to England

What’s new

New data for the years 2020, 2021, 2022 and 2023 have been added to indicators in the dying well domain of the dementia profile.

This update includes new data for 3 indicators for England, health geographies (including NHS regions, integrated care board (ICB) areas and sub locations of ICB) and administrative geographies (including regions and upper tier local authorities (UTLA)). One indicator has new data for England and administrative geographies only in this update.

One indicator has been updated that shows the direct standardised rate (DSR) of mortality of people with dementia aged 65 years and older. Historical data for this indicator (up to 2019) has been revised using rebased population estimates, that align with Census 2021 data.

Three place of death indicators have been updated for deaths of people aged 65 years and older. These indicators are the percentage of deaths that occur:

• in an acute or community hospital
• in a care home (residential or nursing)
• at home

Introduction

The aim of the dementia profile is to improve the availability and accessibility of data and intelligence around the [NHS England well pathway for dementia](NHS England » Dementia. It provides an overview across health geographies and administrative geographies in England, to support ICB and local authorities in the commissioning and planning of local dementia services.

Data on deaths presented in this publication and the dementia profile relate to those where dementia is included on the death certificate. Not all certifications will be based a formal diagnosis of dementia being recorded on primary care systems.

Main findings

Indicators updated in the dementia profile show:

• deaths with dementia peaked in England in 2020 at 111,400 an increase of 23.6% on 2019 (impacted by the COVID19 pandemic) whereas in subsequent years, the counts of deaths decreased, with 91,500 being registered in 2023
• the standardised rate for deaths with dementia in England in 2023 was 828 per 100,000 people aged 65 years and older, continuing the downward trend seen prior to the pandemic, from 918 per 100,000 in 2018
• during the COVID19 pandemic years, the standardised rate for dementia deaths were 1,063 per 100,000 and 889 per 100,000 in 2020 and 2021 respectively
• the majority of people in 2023, who died with dementia recorded on their death certificate, did so in a care home (56.4% residential or nursing), with 26.3% in an acute or community hospital and 15.5% at home
• recorded deaths in hospital have continued to decrease in recent years, in line with the pre COVID19 trends, with the percentage in 2023 (26.3%) being lower than preceding years, excluding 2020 when a lower proportion occurred, likely due to COVID19 hospital lock downs
• since 2019 there has been a 40.6% increase in deaths at home, with 14,150  registrations in 2023. This trend peaked in 2021 and remains 4.3 percentage points higher for home deaths than the percentage reported in 2019
• the percentage of deaths occurring in care homes peaked in 2020 at 59.7%, while in subsequent years this has decreased and remains below the pre-pandemic trend of 58.4% (in 2018), with 56.4% recorded in 2023

Variations across England

Variation exists across the administrative regions of England in terms of standardised death rates for dementia. Rates range from 758 per 100,000 to 906 deaths per 100,000, with rates in 5 of the 9 regions higher than the England rate (East Midlands, North East, North West, Yorkshire and The Humber, West Midlands).

Considerable variation in place of death statistics also occurred across ICB areas in 2023. There is a 2-fold variation in the percentage of deaths occurring in hospitals, with the range from 17.0% to 39.5%, with a similar variation occurring for care homes (35.3% to 66.3%). The 5 ICB areas with the highest percentage of deaths in hospital also have the 5 lowest percentage rates of deaths in care homes. This variation will reflect a number of factors, including individual choice, local care home provision for people with dementia and local service provision to enable people to stay in their own home.

Further information

Local considerations: care homes

When interpreting indicators on care homes commissioners and service providers should consider:

• is generalist and specialist palliative care provision for care homes adequate to care for people with dementia, in and out of hours?
• does this meet the needs set out in the Enhanced health in care homes framework?
• is there adequate provision for education, training and support for care home staff?
• are arrangements for rapid access to medicines and equipment, including syringe drivers sufficient?

Local considerations: hospital

When interpreting indicators on hospital use at the end of life, commissioners and service providers should consider:

• do hospitals have adequate arrangements for recognising when someone is likely to be in the last year of life and also when someone is imminently dying?
• how do hospitals ensure that all the clinical and support staff have adequate training to support people near the end of life?
• is there access to specialist palliative care advice any time of day or night?
• what arrangements do hospitals have for ensuring high quality palliative and end of life care for the person, including care after death, and for those important to them and for bereavement?

Local considerations: home

When interpreting indicators on people with dementia who died at home commissioners and service providers should consider:

• whether their community specialist palliative and social care home services can adequately meet the needs of those with dementia who wish to die at home?
• whether the levels of identification and offer of personalised care and support planning can be improved?
• is there adequate support for unpaid carers involved in looking after the person at home?

Other resources

Further information relating to these indicators is available from the dementia profile.

Responsible statistician, product lead: Programme Lead (National dementia intelligence) function of Clinical Epidemiology division in Department of Health and Social Care

For queries relating to this document, please contact [email protected]