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 first factsheet in the series and will look at dementia incidence rates, palliative care and cardiovascular comorbidities for people with dementia, people with mild cognitive impairment and people with young onset dementia.

The following charts are all 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.

Incidence rates

The count of people being newly diagnosed with dementia is published each month by NHS England. The incidence rate for diagnosed dementia is the count of new cases, within a time period, as a proportion of the number of people at risk from the developing the disease at the start of the period.

Monitoring new dementia diagnoses is essential for effective public health management of diseases, resource allocation for service provision for early detection, treatment interventions and caregiver support, and public awareness. The following sections describe the new data available on this topic.

Monthly data

The key findings from the monthly data include:
  • there were 5,973 new dementia diagnoses recorded in December 2023 for England, which equates to an incidence rate of 55.9 new diagnoses per 100,000 people aged 65 and over at risk per month (chart 1)
  • there was a seasonal trend for England across the year to date, with the lowest incidence rate being in December (chart 1)
  • the incidence rates in all regions follow a seasonal trend throughout the year with the lowest rate in December (chart 2)

Chart 1 and 2 show monthly data for England and the 7 NHS regions.

1. England monthly data
2. Region monthly data

Annual estimates

The key findings from the annual data include:
  • the estimated number of new cases of dementia recorded on English primary care systems per year is 86,840 based on current available data between May and December 2023
  • there was an annual incidence rate of 820 new diagnoses per 100,000 people per year aged 65 years and older in England and this represents 19.5% of the recorded dementia population (aged 65 and older) at the start of the time series (population of 445,216 in May 2023)
  • there was significant regional variation in the annual estimates from 740 to 880 new diagnoses per 100,000 people at risk per year, the highest rate was in the East of England and the lowest rate was in London (chart 3)
  • there was significant ICB variation in the annual incidence rates, ranging from 640 for NHS Kent and Medway Integrated Care Board and NHS Dorset Integrated Care Board to 1,140 for NHS Bristol, North Somerset and South Gloucestershire Integrated Care Board (chart 4)

Chart 3 and 4 show annual estimated data for the 7 NHS regions and 42 ICBs grouped by region.

3. Region annual estimates
4. ICB annual estimates

Relevance

Over 86,000 people each year in England are newly diagnosed with dementia and start learning how to live with a long-term neurodegenerative disease. This addition represents a 19.5% increase to the number of people with a formal diagnosis of dementia over a 12 month period.

The incidence rate of diagnosed dementia in local areas in this factsheet, illustrates the variation in the diagnostic processes that are being funded by integrated care boards. The estimated annual data illustrates a two fold variation in the numbers of new diagnoses per 100,000 people at risk, with 11 of the 42 ICB areas being statistically lower than the England rate.

National policy makers and local commissioners may wish to use these indicators to inform actions that address the potential unwarranted variation in local incidence rates. This could include provision for case detection strategies and diagnostic services such as memory clinics.

Palliative and end of life care

The National Institute for Health and Care Excellence (NICE) describes palliative care as the holistic care of people with advanced, progressive illness. It goes on to say that the management of pain and other symptoms and provision of psychological, social and spiritual support is paramount and that the goal of palliative care is to achieve the best quality of life for people and their families. The following figures look at the numbers and percentage of people with a recorded diagnosis of dementia who are also recorded on primary care palliative care/support registers. Please note that it cannot be assumed that dementia is the primary reason for being on the register.

Latest findings

The latest findings for the palliative and end of life care indicator were:
  • there were 84,456 people with dementia on palliative care registers in December 2023 in England which equates to 18.2% of all people with dementia (chart 5)
  • there was a significant increase in the percentage of people with dementia on palliative care registers between April and December 2023 (1.2 percentage points), resulting in an increase of 8,980 people (chart 5)
  • there was significant regional variation in the percentages of people on palliative care registers from 22% to 12.5% in December 2023, the highest percentage was in the Midlands and the lowest percentage was in the South West (chart 6)
  • there was significant variation in the ICB percentages, ranging from 30.3% for NHS Nottingham and Nottinghamshire Integrated Care Board to 6.2% for NHS Cornwall and the Isles of Scilly Integrated Care Board (chart 7)

Chart 5 and 6 show monthly data for England and the 7 NHS regions. Chart 7 shows the latest data for the 42 ICBs.

5. England monthly data
6. Region monthly data
7. ICB latest data

Relevance

This factsheet provides insight into the variation across England of people with dementia who are recorded on primary care palliative care registers. In 2023, there were 89,955 deaths registered in England which mentioned dementia on the death certificate. These conditions accounted for a large percentage (16.5%) of all deaths registered in that year.

People with dementia also represent a large proportion of palliative care registers in England: in March 2023 there were 290,433 people on the registers, of which approximately 26% (75,476 people, April 2023) had a diagnosis of dementia.

NICE guidelines recommend that from the point of diagnosis, people living with dementia should be offered flexible, needs-based palliative care. However, not all people will have care needs at that time and some guidelines suggest that palliative care is more relevant for people with severe dementia who have significant impairment of memory, functioning, speech or understanding. A 2014 report from the Alzheimer’s Society estimated that 12% of people with dementia aged over 60 might have a severe form of the syndrome.

This factsheet shows that the majority of people (73.2% in December 2023, see next section) with dementia have comorbid conditions and this means they often have more complex health and care needs which require more specialised palliative care. Commissioners and providers may wish to consider the current service provision to ensure the correct skill mix and capacity is available in order to provide the best possible end of life care for people with dementia.

Cardiovascular comorbidities

Comorbidity refers to more than one illness occurring in one person at the same time. The following figures look at the numbers and percentage of people with a recorded diagnosis of dementia who have one or more cardiovascular comorbidities from the following list: diabetes, stroke, hypertension or coronary heart disease (CHD). Understanding comorbidities in people with dementia is fundamental for optimizing patient care, assessing risks, predicting outcomes, allocating resources efficiently, advancing research efforts, and delivering patient-centered healthcare.

Latest findings

The latest findings for the cardiovascular comorbidities indicator were:
  • there were 339,741 people with dementia who had comorbidities from the selected list, which equates to 73.2% of all people with dementia and this percentage has remained stable over the time series (chart 8)
  • the total dementia population increased over this time and this resulted in higher numbers of people with dementia and comorbidities, an extra 15,631 people between April and December 2023 (chart 8)
  • there was significant regional variation in the percentage of people with dementia that have recorded comorbidities in December 2023, they were more common in the London region (76.7%) and less common in the South West (71.3%) and South East (70.7%) (chart 9)
  • at ICB level, the percentages of people with comorbidities range from 69.2% for NHS Surrey Heartlands ICB to 78.7% for NHS North East London Integrated Care Board and NHS North West London Integrated Care Board
  • there is significant variation between ICBs, both above and below the England percentage (chart 10).

Chart 8 and 9 show monthly data for England and the 7 NHS regions. Chart 10 shows the latest data for the 42 ICBs.

8. England monthly data
9. Region monthly data
10. ICB latest data

Relevance

A Public Health England (PHE) study found that people living with dementia are more likely to have complex health needs and several comorbidities. In terms of cardiovascular comorbidities, 44% of people also have a diagnosis of hypertension, 20% had diabetes, 18% had coronary heart disease and 18% had had a stroke or transient ischaemic attack (TIA).

The study also found that the diagnosis of comorbid conditions is more difficult to achieve as severity of dementia increases and this may lead to the underdiagnosis of some conditions that people living with dementia experience.

Commissioners and health and care providers may wish to consider the mechanisms they have in place to proactively diagnose, manage and treat the comorbid conditions that people living with dementia experience, particularly those living with more severe dementia.

Mild cognitive impairment

Mild Cognitive Impairment (MCI) is characterized by objective cognitive impairment (but not severe enough to merit a diagnosis of dementia), but without significant impact on daily activities or discernible progression over time. In general, over 3 years, one third of people with MCI spontaneously improve (suggesting that their symptoms were caused by depression, anxiety, or self limiting physical illness), one third stay the same, and one third progress to dementia. The following figures look at the numbers and percentage of people with MCI.

Latest findings

The main findings for the MCI indicator were as follows:
  • the latest data for England show that there were 142,319 people aged 65 and older who have MCI but do not have a formal diagnosis for dementia, which equates to 1.3% of all people aged 65 and over registered with primary care and this percentage has remained stable across the year to date (chart 11)
  • the percentage of people with MCI ranged across the regions from 1.1% to 1.6% in December 2023, with the lowest percentage in the East of England and Midlands regions and the highest was in the North West region (chart 12)
  • the ICB percentages ranged from 0.8% for NHS Cornwall and the Isles of Scilly Integrated Care Board and NHS Dorset Integrated Care Board to 1.9% for NHS North Central London Integrated Care Board and NHS Somerset Integrated Care Board (chart 13)

Chart 11 and 12 show monthly data for England and the 7 NHS regions. Chart 13 shows the latest data for the 42 ICBs.

11. England monthly data
12. Region monthly data
13. ICB latest data

Relevance

MCI is a heterogeneous clinical syndrome reflecting a change in cognitive function and deficits on neuropsychological testing (attention and concentration, memory, visual perception, language and problem solving skills). MCI is a risk state for further cognitive and functional decline with 5% to 15% of people developing dementia per year, and around one third developing dementia over a 3 year period.

The Manchester Consensus stated that rarely do memory services follow the course of cognitive impairment until the threshold for dementia is reached, or no further deterioration is expected. Full implementation of a policy of annual follow-up would have enormous implications for services in acute and mental health trusts across the UK, necessitating significant investment.

Commissioners and health and care providers may wish to consider the capacities of memory services to manage people with MCI in preventing and delaying the onset of dementia and ensuring that when dementia is developed then an early diagnosis is provided with access to appropriate treatments.

Young onset dementia

While the core symptoms of dementia may be similar regardless of the age of onset, the specific challenges and impact of the condition can differ significantly between young onset dementia (YOD) and later onset dementia (LOD). Specific challenges for people with YOD could be difficulties in caring for children or sustaining work for example. Awareness of this type of dementia has been increasing in recent years but there are still gaps in awareness, understanding and support services for the condition. The following figures look at the numbers and percentages of people diagnosed with YOD.

Latest findings

The main findings for the YOD indicator were as follows:
  • the latest England data show that there were 34,150 people with dementia who were diagnosed before the age of 65 which equates to 7.1% of all people with dementia (chart 14)
  • there has been a decreasing trend throughout the year in the percentage of people diagnosed with YOD and this is due to an increase in the overall dementia population which forms the denominator for this indicator
  • the absolute numbers of people diagnosed with young onset has remained similar across the period with 34,216 people recorded in April 2023 and 34,150 recorded in December 2023 (chart 14)
  • there was significant regional variation in the percentage of people diagnosed with YOD, from 8.3% to 5.5% in December 2023, the highest percentage was in the London and the lowest was in the South East region (chart 15)
  • there is also significant variation in the ICB percentages, ranging from 4.5% for NHS Surrey Heartlands ICB to 10.6% for NHS North West London Integrated Care Board (chart 16)

Chart 14 and 15 show monthly data for England and the 7 NHS regions. Chart 16 shows the latest data for the 42 ICBs.

14. England monthly data
15. Region monthly data
16. ICB latest data

Relevance

When compared to older people, younger people with dementia are more likely to have a rarer or inherited form of dementia. YOD often presents in its early stages as behavioral changes, depression, and psychosis, and patients may not develop cognitive deficits until later in the disease process.

Developing young onset dementia, while of working age, impacts not only on current employment opportunities and future career prospects, but also on the ability to be financially sustainable. This includes servicing mortgages, future pension provision and the accrual of saving for financial independence. In addition, those diagnosed with young onset are likely to have younger and more dependent children and having additional caring responsibility for parents.

Commissioners and health and care providers may wish to acknowledge the additional health and social care needs of people with young onset dementia, the impacts of which are felt on the lives of the individuals and those of their families, well beyond their 65th birthday. Local service provision should cater for this minority group of service users.

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

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 our 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, unfortunately the data are not 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.

Incidence

For the purpose of this factsheet, new diagnoses of dementia are those which are recorded on primary care systems during the reporting month and this can occur in a different month to when the diagnosis took place. Counts can include people of any age but the vast majority will be aged 65 or over.

The number of new diagnoses can be used to estimate incidence rates, these are defined as the estimated rates of new dementia diagnoses per 100,000 people at risk and two different versions are included in this factsheet:

  • Per month - Numerator is the individual monthly count of new diagnoses
  • Per year - Numerator is a sum of the monthly counts of new diagnoses for all available months, extrapolated to 12 months to create a full year estimate

The denominator represents the people at risk of developing dementia, defined here as those aged 65 or over who are registered with primary care at the start of the reporting period and do not have a dementia diagnosis recorded on the primary care system at that time. The indicator value is derived by dividing the numerator by the denominator and multiplying by 100,000 to get the rate.

Palliative and end of life care

The palliative care indicator is defined as the percentage of people aged 65 or over who have a recorded diagnosis of dementia and are recorded on the palliative care register. The denominator is the total count of people on primary care dementia registers on the last day of each month. The people with dementia who are also on primary care palliative care registers on the last day of the month are counted in the numerator. The numerator is divided by the denominator to create a percentage. Please note that dementia is not necessarily the primary reason for being on the palliative care register.

Cardiovascular comorbidities

This indicator is defined as the percentage of people aged 65 or over with dementia who have one or more of the selected comorbidities: diabetes, stroke, hypertension or coronary heart disease (CHD). The denominator is the total count of people on primary care dementia registers on the last day of each month. The people with dementia who also have one of the listed conditions recorded on the system are counted in the numerator. The numerator is divided by the denominator to create a percentage.

Mild cognitive impairment

The value for this indicator is described as the percentage of people aged 65 or over who have a mild cognitive impairment but not dementia. The denominator is all people on primary care lists who do not have dementia. Of this group, people who have mild cognitive impairment recorded on the primary care system will be counted in the numerator. The numerator is divided by the denominator to create a percentage.

Young onset dementia

This indicator represents the percentage of people with dementia diagnosed before the age of 65. The denominator is a count of people of any age with a recorded diagnosis of dementia. The numerator is a subset of people included in the denominator, who were diagnosed with dementia before the age of 65. The numerator is divided by the denominator to create a percentage.

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 incidence rates and all other indicators 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.

Contact us

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

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