Dementia surveillance illustrates the disparities that exist across England in relation to the diagnosis of people with dementia and subsequent care they receive. It is aimed at informing national and local policy development, and for local commissioners to help in planning services around the needs of people with dementia. This document concentrates on England and 7 NHS regional geographies and shows data from April 2023 to March 2024. It includes comparisons of the latest values for the 42 Integrated Care Boards (ICB). Separate factsheets for the ICB are also available.
The national aspiration is that two-thirds (66.7%) of people estimated to be living with dementia should have a formal diagnosis recorded in their primary care notes. This reflects the 2015 prime minister’s challenge to increase the numbers with a formal diagnosis of dementia. A timely diagnosis enables people living with dementia, their carers and healthcare staff to plan accordingly and work together to improve health and care outcomes. The 2 sections below present data on dementia diagnosis rates and diagnosed prevalence.
NHS England measure compliance with the national aspiration of dementia diagnosis levels using the estimated dementia diagnosis rate (EDDR). The EDDR is calculated as the number of people with a formal diagnosis of dementia divided by the number of people in the locality, aged 65 years and older, who are estimated to have dementia using the Cognitive & Function Assessment Study (CFAS II) prevalence rates.
The interactive chart in figure 1.1 shows the monthly value for EDDR as the rate of people diagnosed with dementia per 100 people expected to have dementia, aged 65 and over. Trend lines are shown for England and NHS regions against the national diagnosis aspiration line of 66.7%.
Figure 1.1
In March 2024, there were 720,296 people aged 65 and over estimated to have dementia in England. Of these, 466,485 have been formally diagnosed and added to the dementia register making the EDDR for England 64.8%. This was statistically similar to the 66.7% aspiration. The rate varied over the reporting time between 63.1% and 64.8%.
When looking at the regional variance for this period, the highest rate of 69.5% was in the North West while South West noted the lowest rate of 60.2%. Compared to the 66.7% aspiration value, none of the NHS regions placed statistically above it, South West placed below it and 6 regions showed no significant difference (London, Midlands, South East, East of England, North West, and North East and Yorkshire).
The interactive chart in figure 1.2 shows the latest value for EDDR as the rate of people diagnosed with dementia per 100 people expected to have dementia, aged 65 and over. The bar chart displays the 42 ICB in England grouped by NHS region.
Figure 1.2
In March 2024, the EDDR for England varied across the 42 ICB between 53.8% (Herefordshire and Worcestershire) and 75.5% (South Yorkshire). One ICB was significantly above the 66.7% national aspiration (South Yorkshire) and 14 below it (Suffolk and North East Essex, Cambridgeshire and Peterborough, North East London, Birmingham and Solihull, Shropshire, Telford and Wrekin, Coventry and Warwickshire, Herefordshire and Worcestershire, Humber and North Yorkshire, Kent and Medway, Bath and North East Somerset, Swindon and Wiltshire, Cornwall and the Isles of Scilly, Devon, Dorset, and Somerset).
Prevalence describes the frequency of existing cases in a defined population at a given point in time. Measuring prevalence can be particularly helpful in assessing the need for preventive action and the planning of health services. Prevalence illustrated below is the number of people with a formal diagnosis of dementia on their primary care record, as a percentage of those registered with the primary care practices. The population it measures is aged 65 years and older.
The interactive chart in figure 2.1 shows the monthly prevalence for those with a formal diagnosis of dementia as trend lines for England and NHS regions.
Figure 2.1
In March 2024, the diagnosed dementia prevalence in people aged 65 and over for England was 4.2% of the 11.2 million registered patients. Over the reporting time, the prevalence was between 4% and 4.2%. Across NHS regions, the highest rate of 4.3% was in the North West while South West noted the lowest rate of 4%. Compared to the 4.2% national value, one region placed above it, 2 of the regions placed below it (London and South West), and 4 showed no statistical difference (Midlands, South East, East of England, and North East and Yorkshire).
The interactive chart in figure 2.2 shows the latest prevalence for those with a formal diagnosis of dementia as a bar chart for the 42 ICB in England grouped by NHS region.
Figure 2.2
In March 2024, the diagnosed dementia prevalence in people aged 65 and over for England varied across the 42 ICB between 3.5% (Herefordshire and Worcestershire) and 4.7% (South Yorkshire and Surrey Heartlands).
Ensuring dementia patients receive a high quality of care is one of the aspirations outlined in the Prime Minister’s challenge on dementia 2020. This section illustrates data on memory clinic referrals, antipsychotic prescribing and planning care for people of all ages with a record of dementia diagnosis.
The majority of formal diagnoses of dementia are provided by specialist clinicians at memory assessment services (memory clinics). To receive a referral to a memory clinic from primary care, an individual should be first assessed to eliminate any potential underlying causes that may be contributing to memory and welfare issues. Since March 2020, the COVID19 pandemic has affected the provision of the usual health services in England, limiting access to memory assessment services.
The interactive bar chart in figure 3.1 shows the referrals to memory clinics as a percentage of all individuals receiving an assessment for dementia since 1 April 2023 for England and NHS regions. The memory clinic referrals data is cumulative and resets in April each year.
Figure 3.1
Between April 2023 and March 2024, there were 39,209 referrals to specialist memory assessment services in England. This was 13.3% of all dementia assessments provided. Higher than England percentages of referrals were recorded in 2 of the regions (East of England and North East and Yorkshire) with the top value of 18.4% in East of England. Lowest value was in North West (11.4%) with 5 of the regions placed statistically below the England value (London, Midlands, South East, South West, and North West).
The interactive bar chart in figure 3.2 shows the referrals to memory clinics as a percentage of all individuals receiving an assessment for dementia since 1 April 2023 for the 42 ICB in England grouped by NHS region. The memory clinic referrals data is cumulative and resets in April each year.
Figure 3.2
Between April 2023 and March 2024, the percentage of referrals to specialist memory assessment services out of all dementia assessments provided in England varied across the 42 ICB between 4.9% (Leicester, Leicestershire and Rutland and Dorset) and 33.9% (Derby and Derbyshire).
People with dementia may develop behavioural and psychological symptoms (BPSD) including agitation, aggression, distress, and psychosis. They are often prescribed antipsychotic medication. The National Institute for Health and Care Excellence (NICE) guidance recommends prescription of antipsychotics should be undertaken with serious consideration.
The interactive chart in figure 4.1 shows the number of people with dementia receiving a prescription for antipsychotic medication in the preceding 6 week period, as a percentage of all individuals with a formal diagnosis of dementia. It displays the England and NHS regional trend lines.
Figure 4.1
In March 2024, 9% of people with a diagnosis of dementia also received a prescription for antipsychotic medication in the preceding 6 week period in England. The highest levels of antipsychotic prescribing were in 2 of the regions (Midlands and East of England) with the top value of 10.3% in East of England. Lowest prescribing levels were in North East and Yorkshire (7.8%) with 3 of the regions placed statistically below the England value (South West, North West, and North East and Yorkshire). The remaining 2 areas (London and South East) showed no statistical difference from the national prescribing levels.
The interactive chart in figure 4.2 shows the number of people with dementia receiving a prescription for antipsychotic medication in the preceding 6 week period, as a percentage of all individuals with a formal diagnosis of dementia. The bar chart displays the 42 ICB in England grouped by NHS region.
Figure 4.2
In March 2024, the percentage of people with a diagnosis of dementia who also received a prescription for antipsychotic medication in the preceding 6 week period varied across the 42 ICB in England between 6.9% (Humber and North Yorkshire) and 12.1% (Norfolk and Waveney).
Following a diagnosis of dementia, a care plan should be put in place as soon as possible. This plan should set out the care needed by the person and those caring for them and it should be reviewed regularly. If a care plan is not current, there could be unmet needs for the individual leading to the deterioration of their health and wellbeing. The dementia care pathway full implementation guidance recommends that the care plan should be reviewed within at least 12 months of being agreed, then reviewed every 12 months in accordance with changes in the person’s needs. There will be geographical differences in what team provides care plans and reviews as different local services develop care plans in different parts of the country.
The interactive bar chart in figure 5.1 shows the number of people with dementia who have received a care plan or care plan review in the preceding 12 month period as a percentage of all individuals with a formal diagnosis of dementia. This data is cumulative and the monthly values can be used as a performance measure to indicate progress in the given area but they are not suitable for comparisons over time. Annual trends can be seen in the Dementia Profile by comparing data collected at the end of March each year.
Figure 5.1
In March 2024, there were 481,707 people with a dementia diagnosis in England. Of these, 361,986 had a care plan or care plan review recorded in the past 12 months (75.1%).
When looking at the regional variance for this period, the highest percentage of 76.9% was in the North West while Midlands noted the lowest value of 73.3%. Compared to the 75.1% England value, 3 of the NHS regions placed above it (London, North West, and North East and Yorkshire), 3 below (Midlands, South East, and East of England) and South West was statistically similar to it.
The interactive bar chart in figure 5.2 shows the number of people with dementia who have received a care plan or care plan review in the preceding 12 month period as a percentage of all individuals with a formal diagnosis of dementia. The bar chart displays the 42 ICB in England grouped by NHS region.
Figure 5.2
In March 2024, the percentage of people with a diagnosis of dementia who also received a care plan or a care plan review varied across the 42 ICB in England between 58% (Black Country) and 79.1% (Herefordshire and Worcestershire). 15 ICB were significantly above the 75.1% national value (Suffolk and North East Essex, North East London, South West London, North Central London, North West London, Herefordshire and Worcestershire, Birmingham and Solihull, Nottingham and Nottinghamshire, West Yorkshire, North East and North Cumbria, Humber and North Yorkshire, Greater Manchester, Cheshire and Merseyside, Bristol, North Somerset and South Gloucestershire, and Gloucestershire) and 13 below it (Mid and South Essex, Hertfordshire and West Essex, Norfolk and Waveney, Bedfordshire, Luton and Milton Keynes, South East London, Leicester, Leicestershire and Rutland, Shropshire, Telford and Wrekin, Northamptonshire, Lincolnshire, Black Country, Kent and Medway, Hampshire and Isle of Wight, and Cornwall and the Isles of Scilly).
This document was created by Neurology and Dementia Intelligence team (NDI), part of Clinical Epidemiology in the Department of Health and Social Care (DHSC) on 22 May 2024. Data points represent extracts at the last day of the month. Data used in this publication is available via the Surveillance Factsheet part of the Dementia Profile. Underlying data, caveats and metadata are provided by the NHS. Enquiries: ndi@dhsc.gov.uk
This document is using Primary Care Dementia Data, which replaced the Recorded Dementia Diagnosis data in October 2022. The latter has been analysed in previous Dementia Surveillance Factsheet which reflects geographies from before July 2022. Geography changes are detailed by the data provider.
In the new Primary Care Dementia Data the primary care practice coverage was relatively low to start with, while practices were signing up to the new data collection system. That number has recovered to over 95% in March 2023 but still had incomplete data due to one of the Integrated Care Boards not submitting any data at all. From April 2023 all the ICB submit data and the coverage rises above 98%, which is why that date is the first reported in this factsheet. The latest coverage in March 2024 is 98.7%.
Statistical data comparisons have been made using 95% confidence intervals. If the area’s confidence interval contains the comparator value of the higher geography, the values for both areas are not significantly statistically different from each other. These values are described as ‘not different’ in the factsheet. If the whole confidence interval is above the comparator value, the area’s value is significantly statistically higher than the comparator. These values are described as ‘higher’ or ‘above’. If the whole confidence interval is below the comparator value, the area’s value is significantly statistically lower than the comparator. These values are described as ‘below’ or ‘lower’.