Introduction

This factsheet series presents a summary of new indicators based on data published by NHS England during 2023 as part of the Primary Care Dementia Data (PCDD) publication. PCDD is extracted directly from primary care systems in England, and enables providers and commissioners to make informed decisions about dementia services. The aim of these factsheets is to raise awareness of the new indicators and explore the latest trends at England, NHS region and integrated care board (ICB) level.

This is the second factsheet in the series and concentrates on the dementia types of people with a recorded dementia diagnosis in England. Understanding the type of dementia a person is experiencing can be beneficial for patients, families, GPs, hospitals, social care staff and others. It can help with understanding ways to prevent or delay the onset of some dementias, the likely progression of the condition and planning for the patient’s future as well as future dementia services. It can also help with managing symptoms, accessing appropriate support services, understanding genetic risks and for future research into the condition.

The dementia types included in this report are Alzheimer’s disease, vascular dementia, mixed dementia and other dementia types. The other dementia category includes people with Lewy body dementia, frontotemporal dementia, rarer forms of dementia and people who have unspecified dementia recorded. The unspecified dementia code can be used when a specific diagnosis is in progress, where the symptoms are too complex to categorise or when there would be no clinical benefit in obtaining a specific diagnosis. One study estimates that 29% of people with a recorded diagnosis have an unspecified code recorded. This factsheet includes a comparability section to discuss other sources of similar data.

The number of people with a recorded dementia diagnosis is increasing. Between the 30th of April 2023 and the 30th of April 2024 this number increased by 21,265 (4.6%) to a total of 481,783 people. The level of change is determined by the number of people who pass away and are removed from primary care systems, as well as the number of new diagnoses that are added to primary care systems. It is estimated that there are approximately 86,840 new diagnoses recorded each year year. Based on the above numbers, we can estimate that there were approximately 65,575 deaths of people with a recorded diagnosis over this period. This number is lower than the annual total of dementia deaths because people can have dementia mentioned on a death certificate without having a formal diagnosis recorded on the primary care system.

All charts in this factsheet are interactive, please see the chart interaction section for details of the available functionality. For further information about the calculation of the indicators please see the methodology section. All of the factsheets in this series can be found on the Fingertips platform.

Dementia type counts

This section looks at the counts and proportions of people with different dementia types at England and region level. People of all ages are included in the data, although the majority of people (96.9%, April 2024) with a recorded diagnosis are aged 65 or over.

England monthly data

The main findings for the England monthly data were:

  • the most common type of dementia was Alzheimer’s disease, accounting for 43.5% of people (208,603) with a recorded diagnosis in November 2023 and this was followed by other dementias, representing 34.8% (166,888 people) of the total
  • people with vascular dementia (79,352) and mixed dementias (28,656) accounted for 16.5% and 6.0% of people with a recorded diagnosis respectively
  • there were increases in the numbers of people for all dementia types across the time series shown and the largest percentage increase (30.6%) was for mixed dementia
  • there were smaller percentage increases for the remaining categories, with Alzheimer’s, other dementias and vascular dementia showing uplifts of 4.7%, 4.3% and 3.2% respectively
  • the number of people with a recorded dementia diagnosis increased every month between April 2023 and November 2023 and increased by 19,134 over the time series to a total of 479,652 people

Figure 1 shows the counts of people with each dementia type in England by month.

Regional data, November 2023

This section looks at the counts and proportions of people with different dementia types at region level. People of all ages are included in the data, although the majority of people with dementia are aged 65 or over. The main findings for the November 2023 regional data were:

  • the most common type of dementia was Alzheimer’s disease across all regions apart from the South West and ranged from 38.5% (South West) to 47.1% (North East and Yorkshire) of the region totals
  • there were also high proportions of people in the other dementias category, which ranged from 24.2% (North West) to 41.3% (East of England) and was the most common category recorded for the South West (38.8%)
  • variation in the dementia type proportions is high across the regions, there was 2.2 fold variation for mixed dementia (3.6% to 7.8%), vascular dementia ranged from 13.4% to 21.9% and other dementias varied between 24.2% and 41.3%
  • the proportions of people with vascular dementia (21.9%) and mixed dementias (7.8%) in the North West are significantly higher than all other regions

Figure 2 shows the proportions of people with each dementia type by region for November 2023. The North East and Yorkshire region has been abbreviated to ‘NE and Yorks’ in order to better fit the chart axis. Some regional proportions sum to more than 100% due to different data sources being used for the numerator and denominator. Please see the comparability section for details.

Dementia type rates

This section looks at different dementia types as a rate per 100 people in the population aged 65 and over. The population is based on people registered with primary care practices in England which is also sourced from the PCDD publication. Mixed dementia has been omitted from the following charts as the rates were low (0.3 per 100 people) and an overall rate for people aged 65 or over with any dementia type has been added for reference.

England monthly data

The main findings for the England monthly data were:

  • overall, there were 4.2 people with a recorded dementia diagnosis for every 100 people aged 65 and over in November 2023
  • although the chart suggests an upward trend in the overall rate over the time series, this was not statistically significant
  • the highest dementia type rate was Alzheimer’s disease with 1.9 people per 100 population in November 2023 and this reflects a small but significant increase compared to April 2023 (+0.1)
  • the November 2023 rates for vascular dementia and other dementia types were 0.7 and 1.5 people per 100 population respectively, and these rates show no significant change over the time series

Figure 3 shows the rates of people with each dementia type per 100 people aged 65 and over in England by month.

Regional data, November 2023

This section looks at different dementia types as a rate per 100 people in the population aged 65 and over at region level. The main findings for the November 2023 regional data were:

  • the overall dementia rates ranged from 4.0 people per 100 population in the South West to 4.3 people in the North West
  • the Alzheimer’s disease rates varied from 1.6 people per 100 population in the South West to 2.1 people both in the North West region and in the North East and Yorkshire region
  • the North West also had the highest rate of vascular dementia (1.0 person per 100 population) and this is statistically higher than all other regions
  • the rate of people with other types of dementia was highest in the East of England with a rate of 1.8 people per 100 population and this is statistically higher than all other regions

Figure 4 shows the rates of people with each dementia type per 100 people aged 65 and over by region in November 2023. The North East and Yorkshire region has been abbreviated to ‘NE and Yorks’ in order to better fit the chart axis.

ICB data, November 2023

This section looks at different dementia types as a rate per 100 people in the population aged 65 and over at ICB level. The November 2023 ICB rates show that:

  • there was significant variation in the overall rates of dementia in local populations, ranging from 3.5 people per 100 population in Herefordshire and Worcestershire to 4.7 people per 100 in the Surrey Heartlands
  • the highest rate of Alzheimer’s disease was in the South Yorkshire ICB area with 2.7 people per 100 population and for vascular dementia the highest was in Greater Manchester with a rate of 1.2 people per 100
  • the rate of people with other types of dementia was highest in Mid and South Essex with a rate of 2.5 people per 100 population, closely followed by Nottingham and Nottinghamshire with 2.4 people per 100

Figure 5 shows the rates of people with each dementia type per 100 people aged 65 and over in each ICB in November 2023. Hover over the dots to see the ICB name and exact numbers.

Relevance

Understanding the type of dementia a person is experiencing can be beneficial for patients, families, GPs, hospitals, social care staff and others. It can help with understanding ways to prevent or delay the onset of some dementias, the likely progression of the condition and planning for the patient’s future, planning for future dementia services, managing symptoms, accessing appropriate support services, understanding genetic risks and for future research into the condition.

Prevention

The Alzheimer’s Society (AS) website states that there is a lot of evidence that lifestyle choices can affect our risk of developing dementia. Dementia risk is lowest in people who have healthy behaviours in mid-life (aged 40–65). Healthy behaviours include regular physical and social activities, reducing alcohol and smoking, and maintaining a healthy weight. Understanding the risk factors for different types of dementia allows individuals to make more informed lifestyle choices and allows public health organisations to inform, encourage and support healthier lifestyles for their populations.

Patient planning

Understanding the type of dementia can provide insights into the likely progression of the condition. Some types of dementia can progress more rapidly than others, and knowing what to expect can help individuals and their families make more informed decisions about the future. People with dementia may want to think about where they will live, who will look after their money or make decisions about their care in future if they become unable to do so themselves.

Service planning

These data may help commissioners and providers to plan the provision of dementia services in their local areas. Different types of dementia present with different symptoms and have different prognoses, therefore it is important to understand how much of each type exists and allow managers to shape the service offer to the needs of the population.

Managing symptoms

Knowing the specific type of dementia can help caregivers and healthcare providers anticipate and manage symptoms more effectively, improving the individual’s quality of life. There are some medications and interventions that can help manage the symptoms of dementia or slow down their progression. New drugs are currently in development for the treatment of Alzheimer’s disease.

Accessing support

There are a diverse range of support services available for people with dementia and this should normally be discussed with the patient following a diagnosis. Understanding the dementia type can help to provide more appropriate support, tailored to the individual’s specific needs.

Genetic risks

Certain types of dementia, such as familial Alzheimer’s disease, have a genetic component. Knowing the specific type can help individuals and families understand their genetic risk factors, allowing them to make more informed decisions about their future.

Future research

Identifying the type of dementia is essential for participation in clinical trials and research studies aimed at developing new treatments or understanding the underlying causes of the disease. Different types of dementia have distinct underlying pathologies, and researchers often concentrate on specific types to advance scientific knowledge and develop targeted interventions.

Comparability

Alzheimer’s Society data

This factsheet shows that there were the following proportions of people with each dementia type in November 2023:

  • Alzheimer’s disease 43.5%
  • Vascular dementia 16.5%
  • Mixed dementia 6.0%
  • Other dementia types 34.8%

Due to the high proportion of people in the other dementia category (many of whom will be people who currently have an unspecified diagnosis), the counts of people with Alzheimer’s and mixed dementia are likely to be under reported. The Dementia UK report published in 2014 estimates that the proportions of people with each dementia type are:

  • Alzheimer’s disease 62%
  • Vascular dementia 17%
  • Mixed dementia 10%
  • Dementia with Lewy bodies 4%
  • Frontotemporal dementia 2%
  • Parkinson’s dementia 2%
  • Other dementia types 3%


Other NHS England data

From April 2023 to March 2024, there were some discrepancies between numbers in different tables of the PCDD summary files. This factsheet uses the counts of recorded dementia types from table 3b for the numerators. The sum of these counts does not match the unique number of people with any recorded dementia type, used as denominators for the dementia type proportions, these have been taken from table 1. This mismatch occurred because more than one dementia type could be recorded for the same person. For example in November 2023, the sum of the dementia type counts presented in table 3b was 483,499, while the unique number of people with any dementia diagnosis in table 1 was 479,652 (3,847 lower). As of May 2024, a new dementia type, inconclusive, has been introduced to table 3b to describe the people with more than one dementia type recorded. This has brought the sum of the counts in table 3b closer to the unique people count in table 1.

Methodology

Methodology details for each of the indicators can be found below. Please note that the methodologies described below are experimental and have been used to demonstrate possible ways of using the new data. All queries, comments and suggestions for the methodologies are welcome. Please see the contact us section for details.

All of the rates and percentages here are standardised to the local population size. It would be preferable to also standardise these values by age, in order to account for different age distributions across the regions and ICBs. However, the data are not currently detailed enough to allow for this. This means that indicator values for locations with similar age distributions can be compared for benchmarking purposes, but caution is advised for comparisons between those which are different.

Dementia type counts

The dementia type counts are extracted directly from primary care systems and reflect recorded cases of dementia only. It is important to note that many people will be living with dementia but will not have a recorded dementia diagnosis. The PCDD publication estimates that there were 716,565 people aged 65 and over with dementia in November 2023 and this indicates that the recorded counts significantly underestimate the true totals.

Dementia type proportions

The proportion of people with each dementia type is the number of people with the dementia type (table 3b, PCDD summary file) divided by the unique number of people who have dementia (table 1, PCDD summary file), multiplied by 100. This metric includes people of all ages in the numerator and denominator, however the majority of people with dementia are aged 65 or over.

Dementia type rates

The rate of people with each dementia type is the number of people with the dementia type (table 3b, PCDD summary file) divided by the number of people registered with primary care practices (PCDD care plans file). The numerator includes people of all ages, however the majority are aged 65 or over. The denominator is restricted to people aged 65 and over as this is the population most likely to be affected by dementia.

Confidence intervals

There are two types of confidence intervals used in this factsheet. The Byar’s method is used to calculate confidence intervals for the rates and the proportions use the Wilson Score method. The formulae for these methods are set out in the technical guide for confidence intervals, which can be found on the fingertips guidance page.

Chart interaction

All of the above charts have been created in an interactive format using R programming and the plotly package.

Where multiple categories are presented in the same chart, the legend of the chart will be interactive. Click once on a category to remove it from the chart and get a clearer view of the remaining categories. Click on the category again to bring it back.

Each chart also has a tool bar at the top right which can be used to interact with the chart and data points. Descriptions of each tool are included below.

Table 1: Chart tools

Contact us

We want to make these data as useful as possible for stakeholders and we would welcome any queries, comments or suggestions. Please use the email address below to contact us:

Dementia Intelligence Team
Department of Health and Social Care (DHSC)
Email: