Primary care dementia data: supporting information

The Department of Health and Social Care (DHSC), on behalf of Secretary of State, have directed NHS England (NHSE) to establish a data collection in order to receive specific dementia diagnosis data to support the Prime Minister's Dementia Challenge. When NHSE received such a direction we issued a Data Provision Notice to the appropriate providers of the required data.

We then collect and publish data about people with dementia at each GP practice so that the NHS (GP’s and commissioners) can make informed choices about how to plan their services around their patient needs.

Data about people with dementia is collected as part of the Core GP Contract service from 2022-23. This supersedes the data collected under the Dementia Data contract service, which was published as the Recorded Dementia Diagnoses publication series.

NHSE welcome feedback from users of its publications to help further development. Please send your valued feedback to GP Data, Extraction, Specification and Analysis at [email protected] 

There are several measures used to assess the number of patients with dementia, and those who have received a formal diagnosis. These are defined as:

1. Recorded prevalence

For each practice in this extract, NHSE receives a count of patients with a formal diagnosis of dementia on their GP patient record as defined by the business rules. No personal identifiable data (PID) are collected through this mechanism; only an aggregate / total number of patients with a dementia diagnosis at each practice, by five-year age band and gender.

NHSE also receive counts of patients registered at each practice. Again, these are non-PID aggregate / total counts for each practice.

Using the data, recorded prevalence for each practice can be calculated as follows:

Recorded dementia prevalence = (Number of patients on dementia register / Number of patients registered at practice) x 100

2. Ethnic group

Data is collected on counts of patients on the GP practice's dementia register which are aggregated into the following ethnic groups to make the data easier to interpret.

These are:

• Asian or Asian British
• Black, African, Caribbean or Black British
• Mixed or multiple ethnic groups
• Other ethnic group
• White
• Not stated - patients who were given an opportunity to state their ethnicity but chose not to do so
• Inconclusive ethnic group - patients that have more than one ethnic group recorded on their patient record and it is not possible to determine which one is correct
• Not defined - patients whose ethnicity is not recorded

April 2024 - Inconclusive ethnic group was also introduced as a means of reducing over counting where patients had more than one ethnic group recorded on their patient record.

3. Dementia type

From April 2023 data has also been collected on counts of patients on the GP practice's dementia register which are aggregated in to the following dementia types:

• Alzheimer's disease
• Vascular dementia
• Lewy body dementia
• Frontotemporal dementia
• Mixed dementia - patients diagnosed as having more than one type of dementia
• Other dementia types - most recently diagnosed dementia type is not Alzheimer's disease, vascular dementia or mixed dementia
• Inconclusive dementia type – patients that have more than one dementia type recorded on their patient record and it is not possible to determine which one is correct

April 2024 - Lewy body and Frontotemporal dementia types were introduced; these breakdowns are available from June 2024. Prior to this these dementia types are aggregated into the ‘Other dementia types’ group.

Inconclusive dementia type was also introduced as a means of reducing over counting where patients had more than one dementia type recorded on their patient record.

Disclosure control is applied to Sub ICB level data, as detailed in the 'disclosure control' section. 

4. Residential type

From April 2023 data has also been collected on counts of patients on the GP practice's dementia register which are aggregated in to the following residential types:

• Residential care home
• Nursing home
• Private residence
• No permanent address
• Other residential type - most recent residential type is not recorded
• Inconclusive residential type - patients that have more than one residential type recorded on their patient record and it is not possible to determine which one is correct

April 2024 - Inconclusive residential type was also introduced as a means of reducing over counting where patients had more than one residential type recorded on their patient record.

5. Assessments and care plans

GP practices also provide a count of patients up to the end of the reporting period who have received an assessment for dementia and who have received or declined an initial memory assessment; a referral to a memory clinic; a care plan; a care plan review; a medication review.

Data relating to assessments for dementia, memory assessments, memory clinic referrals and medication reviews are presented as cumulative counts from the start of the reporting year.

For example:

The count of patients receiving a dementia assessment published for July 2022 will be the sum of assessments carried out in April, May, June and July 2022. Please note that as there will be changes in patient registration each month (deaths, patients leaving a practice, patients joining a practice) it is not possible to subtract one month's figure from another to calculate “new” referrals or reviews.

Data relating to dementia assessments, memory assessments, memory clinic referrals and medication reviews should not be compared with that previously published as part of the Recorded Dementia Diagnoses Data publication; this service ran from October - September, and so the counts were cumulative from a different point in the year.

6. Prescribing of antipsychotics

GP Practices also supply the number of patients with a dementia diagnosis who have had a prescription of antipsychotic medication in the last 6 weeks. This is further divided into patients who have or do not have a diagnosis of psychosis. Disclosure control is applied at GP practice level, as detailed in the 'disclosure control' section. 

7. Dementia diagnosis recorded before the age of 65

GP Practices also supply the number of patients who were recorded as having dementia before the age of 65 (YOUNG_ONSET). Disclosure control is applied to Sub ICB level data, as detailed in the 'disclosure control' section. 

From November 2023 the term 'early onset dementia' has been replaced with 'young onset dementia' in this publication to match internationally agreed terminology. There have been no changes to how these counts have been calculated and data is comparable to previous months where the 'early onset dementia' term was used.

8. Newly diagnosed with dementia

GP Practices also supply the number of patients who had not previously been recorded as having a dementia diagnosis (INCIDENCE). Disclosure control is applied to Sub ICB level data, as detailed in the 'disclosure control' section. 

9. Dementia diagnosis recorded with one or more comorbidities

GP Practices also supply the number of patients who were recorded as having dementia and one or more of the following comorbidities: diabetes, stroke, hypertension and coronary heart disease (COMORBIDITIES). Disclosure control is applied to Sub ICB level data, as detailed in the 'disclosure control' section. 

10. Dementia diagnosis recorded with a record of receiving palliative care

GP Practices also supply the number of patients who were recorded as having dementia and are included on the QOF palliative care register (PALLIATIVE_CARE). Disclosure control is applied to Sub ICB level data, as detailed in the 'disclosure control' section. 

11. Mild cognitive impairment without a recorded dementia diagnosis

GP Practices also supply the number of patients who had a diagnosis of mild cognitive impairment (MCI) without a recorded diagnosis of dementia (MILD_COG_IMP). 

April 2024 - This count was updated to count patients aged 40+ with a diagnosis of MCI; prior to this these counts were for patients aged 65+ with a diagnosis of MCI and are therefore not comparable.

April 2024 - breakdowns for age (5 year age bands) and sex were introduced; these breakdowns are available from June 2024.

Disclosure control is applied to Sub ICB level data, as detailed in the 'disclosure control' section. 

Practices included in the dataset

The GP Extraction Service (GPES) extracts data for practices that were open at the relevant date, being the last day of the month for which data were extracted. The following practice types are not included:

• Walk-in centres
• Out-of-hours clinics
• Prisons
• Practices that share a clinical system
• Dormant practices
• Practices that have not approved the collection on the Calculating Quality Reporting Service (CQRS)

The GPES extract is not instantaneous; it runs over several days – known as the “extract window”. There may be occasions where practices data are not received during this extract window, and therefore these practices' data may not be included in the publication.

Prescription of antipsychotics

At GP practice level, disclosure control is applied to counts of patients who have been prescribed antipsychotic medication in the preceding 6 weeks. Counts lower than five (including zero) are replaced by a “*” symbol.

If either of the denominator counts (PSY_DIAG and NO_PSY_DIAG) are suppressed the other denominator count will also be suppressed as it would be calculable, by subtracting the unsuppressed denominator from the DEM_REGISTER count.

For example

In addition, for practices where 100% of patients have been prescribed antipsychotic medication in the preceding 6 weeks counts are also replaced by a “*” symbol. All other practice numbers (except dementia registers) are rounded to the nearest five. Other geographic region totals are not suppressed or rounded. This data is included in the pcdem-prac-anti-psy .csv file.

Medication reviews

At GP practice level, disclosure control is applied to counts of patients who have received a medication review in the last 12 months. Counts lower than five (including zero) are replaced by a “*” symbol. Other geographic region totals are not suppressed or rounded.

This data is included in the pcdem-prac-ass-plans .csv file.

Dementia type

Sub ICB level disclosure control is applied to counts of patients for each dementia type. Counts lower than five (including zero) are replaced by a “*” symbol and counts greater than five are rounded to the nearest 5. Other geographic region totals are not suppressed or rounded.

This data is included in the pcdem-sicbl-dem-type .csv file.

Residential type

Sub ICB level disclosure control is applied to counts of patients for each residential type. Counts lower than five (including zero) are replaced by a “*” symbol and counts greater than five are rounded to the nearest 5. Other geographic region totals are not suppressed or rounded.

This data is included in the pcdem-sicbl-res-type .csv file.

Young onset and incidence

Sub ICB level disclosure control is applied to counts of patients for YOUNG_ONSET and INCIDENCE. Counts lower than five (including zero) are replaced by a “*” symbol and counts greater than four are rounded to the nearest 5. Other geographic region totals and population counts are not suppressed or rounded.

This data is included in the pcdem-sicbl-incidence-onset .csv file.

Comorbidities and palliative care

Sub ICB level disclosure control is applied to counts of patients for COMORBIDITIES and PALLIATIVE_CARE. Counts lower than five (including zero) are replaced by a “*” symbol and counts greater than four are rounded to the nearest 5. Other geographic region totals and population counts are not suppressed or rounded.

This data is included in the pcdem-sicbl-comor-pall-care.csv file.

Mild cognitive impairment

Sub ICB level disclosure control is applied to counts of patients for MILD_COG_IMP. Counts lower than five (including zero) are replaced by a “*” symbol and counts greater than four are rounded to the nearest 5.

From June 2024 both sub ICB and ICB level data has the above disclosure control methodology applied due to the introduction of age and sex bands. Other geographic region totals and population counts are not suppressed or rounded.

This data is included in the pcdem-sicbl-cog-imp.csv file.

The primary care dementia data also contains an Indicator called: Dementia 65+ estimated diagnosis rate. More information can be found on our page outlining the methodology.

The extract specification is defined in terms of business rules. These are available on the NHSE website. The business rules are published online under Enhanced Services (ES), Vaccinations and Immunisations (V&I) and Core Contract (CC) components > Core GP contract.

A data dictionary file is included as part of each publication. The data dictionary is an .xlsx file which contains one tab for each .csv output; the tabs contain details of the fields included in each file and a description of any associated measures.