Recorded dementia diagnoses: supporting information

Introduction

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

We 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.

NHS Digital welcome feedback from users of its publications to help further development. Please send your valued feedback to the Primary Care Domain at [email protected]

Measures

There are a number of measures used to assess the number of patients with dementia, and those who have received a formal diagnosis. We define these as follows:

Recorded prevalence

For each practice collected in this extract, NHS Digital receives a count of patients with a formal diagnosis of dementia on the 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 diagnosis at each practice, by five-year age band and gender.

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

Using these data recorded prevalence for each practice can be calculated as follows;

Ethnic group

NHS Digital also receives counts of patients registered at each practice grouped into 20 ethnic groups. These are aggregated into 6 ethnic groups to make these data easier to interpret. The 6 ethnic groups are:

ASIAN_OR_ASIAN_BRITISH
BLACK_OR_AFRICAN_OR_CARIBBEAN_OR_BLACK_BRITISH
MIXED_OR_MULTIPLE_ETHNIC_GROUPS
NOT_DEFINED
OTHER_ETHNIC_GROUP
WHITE

Assessments and care plans

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

Data relating to Care Plans and Memory Assessments should not be compared with that previously collected under the GP Enhanced service, which ended in March 2015.

Data relating to assessments for dementia, memory assessments and clinics are presented as cumulative counts from the previous October. For example, the count of patients receiving a dementia assessment published in December 2017 will be the sum of assessments carried out in October, November and December 2017.

From the November 2018 release, counts of data for patients with a coded dementia diagnoses who have received a medication review in the preceding 12 months are now collected.

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. To prevent the release of disclosive information, practice data with values lower than five (including zero) are replaced by a “*” symbol. All other practice numbers are rounded to the nearest five. Other geography totals are not suppressed or rounded.

Practices included in the data set

The GP Extraction Service (GPES) extracts data for practices that were open at the relevant date point, being the last day of the month for which data were extracted. We call this the ‘total estate’. This estate only includes those practices defined as a ‘GP Practice’ on the organisational reference data we hold. We do not include practices defined as walk-in centres, out of hours clinics, or prison prescribing cost centres. A further adjustment to the total estate from previous extracts is to also exclude ‘shared’ and ‘dormant’ practices.

Shared practices are those practices which share a clinical system. GPES cannot extract data from these practices, so they are excluded.

Dormant practices are those practices where the practice code has yet to be fully closed, but which have no associated clinicians.

The GPES extract is not instantaneous; it runs over a number of days – known as the “extract window”. Depending on the length of this window, GPES may not manage to collect data for all potential practices.

Business rules

It should be noted that the business rules for this extract may change year on year. The business rules are published online under Quality and Outcomes Framework > Enhanced Services (ES), Vaccinations and Immunisations (V&I) and Core Contract (CC) components > Dementia.

Find the latest version online

Indicator

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

Data dictionary

The following sections provide structural metadata, which describe the contents of each field within the CSV files. If the format of a file changes, the previous data dictionary will be archived with date parameters.

Dementia 65+ Diagnosis Rate Indicator 12 Month Time Series, by NHS Organisation of Responsibility, Month-Year

CSV filename: dem-diag-ind-nhs-<mmm>-<yyyy>.csv

Field name	Field description
ORG_TYPE	Organisational breakdown.
ORG_CODE	Organisational Data Service organisation identifier.
ONS_CODE	All statistical geographies within England have a 9-digit ONS code. These codes ensure that all geographies are referenced consistently across government to allow data to be aggregated, linked, presented and compared on a common base.
NAME	Organisation name.
ACH_DATE	Date of extraction.
MEASURE	DEMENTIA_REGISTER_65_PLUS – Recorded diagnoses of dementia ages 65+. DEMENTIA_ESTIMATE_65_PLUS – Expected diagnoses of dementia ages 65+. DIAG_RATE_65_PLUS – Diagnosis rate (recorded/expected) ages 65+. DIAG_RATE_65_PLUS_UL – Upper 95% confidence limit of diagnosis rate ages 65+. DIAG_RATE_65_PLUS_LL – Lower 95% confidence limit of diagnosis rate ages 65+.
VALUE	Value of measure.
DQ	Flags organisations with a smaller denominator population than the CFAS II reference population with a ‘1’. Values for these organisations should be interpreted with caution.

Dementia 65+ Diagnosis Rate Indicator 12 Month Time Series, by Geographical Organisation, Month-Year

CSV filename: dem-diag-ind-phe-<mmm>-<yyyy>.csv

Field name	Field description
ORG_TYPE	Organisational breakdown.
ORG_CODE	Organisational Data Service organisation identifier.
ONS_CODE	All statistical geographies within England have a 9-digit ONS code. These codes ensure that all geographies are referenced consistently across government to allow data to be aggregated, linked, presented and compared on a common base.
NAME	Organisation name.
ACH_DATE	Date of extraction.
MEASURE	DEMENTIA_REGISTER_65_PLUS – Recorded diagnoses of dementia ages 65+. 7DEMENTIA_ESTIMATE_65_PLUS – Expected diagnoses of dementia ages 65+. DIAG_RATE_65_PLUS – Diagnosis rate (recorded/expected) ages 65+. DIAG_RATE_65_PLUS_UL – Upper 95% confidence limit of diagnosis rate ages 65+. DIAG_RATE_65_PLUS_LL – Lower 95% confidence limit of diagnosis rate ages 65+.
VALUE	Value of measure.
DQ	Flags organisations with a smaller denominator population than the CFAS II reference population with a ‘1’. Values for these organisations should be interpreted with caution.

Recorded Dementia Diagnoses by Age: Care Plans, Assessments and Referrals, Month-Year

CSV filename: rec-dem-diag-<mmm>-<yyyy>-csv.zip

Field name	Field description
ACH_DATE	Date of extraction.
PRACTICE_CODE	The code of the GP practice.
NAME	The name of the GP practice.
COMMISSIONER_ORGANISATION_CODE	This is the parent sub ICB location of the practice.
GEOGRAPHY_CODE	All statistical geographies within England have a 9-digit ONS code. These codes ensure that all geographies are referenced consistently across government to allow data to be aggregated, linked, presented and compared on a common base.
MEASURE	DEMENTIA_REGISTER_0_64 - Patients with record of dementia aged 0 to 64. As defined by the QOF dementia register code cluster. DEMENTIA_REGISTER_65_PLUS - Patients with record of dementia aged 65 and above. As defined by the QOF dementia register code cluster. PAT_LIST_0_64 - Registered patients aged 0 to 64. This data comes from the Exeter (NHAIS) Extract. PAT_LIST_65_PLUS - Registered patients aged 65 and above. This data comes from the Exeter (NHAIS) Extract. ASS_Received_GP - Number of patients with a record of receiving an assessment for dementia by the GP practice.* ASS_Declined_GP - Number of patients recorded as being ‘at risk of dementia’ who have a record of declining an assessment for dementia.* ASS_Received_GP_Mem_Ass - Number of patients with a record of receiving an assessment for dementia by the GP practice who have a record of an initial memory assessment.* ASS_Declined_GP_Mem_Ass - Number of patients with a record of receiving an assessment for dementia by the GP practice who have a record of declining an initial memory assessment.* ASS_Received_GP_Mem_Clinic - Number of patients with a record of receiving an assessment for dementia by the GP practice who have a record of a referral to a memory clinic.* ASS_Declined_GP_Mem_Clinic - Number of patients with a record of receiving an assessment for dementia by the GP practice who have a record of declining a referral to a memory clinic.* DIAG_Received_Care_Plan - Number of patients diagnosed with dementia who have a record of receiving a dementia care plan or dementia care plan review by the GP practice within the 12- month period. DIAG_Declined_Care_Plan - Number of patients diagnosed with dementia who have a record of declining a dementia care plan or declining a dementia care plan review, within the 12-month period.* *Data relating to assessments for dementia, memory assessments and clinics are presented as cumulative counts from the previous October (September for 2019/2020 data). For example, the count of patients receiving a dementia assessment published in December 2017 will be the sum of assessments carried out in October, November and December 2017.
VALUE	Count of measure. Where this number is unavailable the cell is populated by a '.'

Recorded Dementia Diagnoses by Ethnicity, Month-Year: Sub ICB Location level

CSV filename: rec-dem-sicbl-<mmm>-<yyyy>.csv

Field name	Field description
ach_date	Date of extraction.
COMMISSIONER_ORGANISATION_CODE	The code of the sub ICB location
GEOGRAPHY_CODE	All statistical geographies within England have a 9-digit ONS code. These codes ensure that all geographies are referenced consistently across government to allow data to be aggregated, linked, presented and compared on a common base.
SUB_ICB_LOC_NAME	The name of the Sub ICB location.
Measure	Ethnic groupings: ASIAN_OR_ASIAN_BRITISH BLACK_OR_AFRICAN_OR_CARIBBEAN_OR_BLACK_BRITISH MIXED_OR_MULTIPLE_ETHNIC_GROUPS NOT_DEFINED OTHER_ETHNIC_GROUP WHITE
Value	Count of measure.

Recorded Dementia Diagnoses: Prescribing of Anti-Psychotic Medication, Month-Year: Practice level

CSV filename: dem-diag-anti-psy-<mmm>-<yyyy>-csv.zip

Field name	Field description
ACH_DATE	Date of extraction.
PRACTICE_CODE	The code of the GP practice.
NAME	The name of the GP practice.
COMMISSIONER_ORGANISATION_CODE	This is the ODS code of the parent sub ICB location
SUB_ICB_LOC_CODE	The ONS code of the sub ICB location. All statistical geographies within England have a 9-digit ONS code. These codes ensure that all geographies are referenced consistently across government to allow data to be aggregated, linked, presented and compared on a common base.
SUB_ICB_LOC_NAME	The name of the sub ICB location.
ICB_CODE	The ODS code of the integrated care board (ICB).
ICB_ONS	The ONS code of the integrated care board (ICB).
ICB_NAME	The name of the ICB
REGION_CODE	The ODS code of the NHS Commissioning Region.
REGION_ONS_CODE	The ONS code of the region.
REGION_NAME	The name of the region.
Measure	ANTI_PSY_ALL_AGES - Dementia patients with a prescription of antipsychotic medication in the last 6 weeks ANTI_PSY_NO_PSY_DIAG_ALL_AGES - Dementia patients with no diagnosis of psychosis and a prescription of antipsychotic medication in the last 6 weeks ANTI_PSY_PSY_DIAG_ALL_AGES - Dementia patients with a diagnosis of psychosis and a prescription of antipsychotic medication in the last 6 weeks DEM_REGISTER - Total dementia register for the area
Value	Count of measure. Where this number is suppressed a * will appear in its place.

Recorded Dementia Diagnoses by 5 Year Age Bands for 65+, Month-Year: CCG level

CSV filename: dem-diag-sicbl-quin-<mmm>-<yyyy>.csv

Field name	Field description
ach_date	Date of extraction.
COMMISSIONER_ORGANISATION_CODE	The code of the sub ICB location.
GEOGRAPHY_CODE	The ONS code of the sub ICB location. All statistical geographies within England have a 9-digit ONS code. These codes ensure that all geographies are referenced consistently across government to allow data to be aggregated, linked, presented and compared on a common base.
SUB_ICB_LOC_NAME	The name of the sub ICB location.
Measure	Age bandings by gender: AGE_SEX_UNKNOWN ALL_AGED_65_69 ALL_AGED_70_75 ALL_AGED_75_79 ALL_AGED_80_84 ALL_AGED_85_89 ALL_AGED_90_PLUS FEMALE_AGED_65_69 FEMALE_AGED_70_74 FEMALE_AGED_75_79 FEMALE_AGED_80_84 FEMALE_AGED_85_89 FEMALE_AGED_90_PLUS MALE_AGED_65_69 MALE_AGED_70_74 MALE_AGED_75_79 MALE_AGED_80_84 MALE_AGED_85_89 MALE_AGED_90_PLUS
Value	Count of measure. Where this number is unavailable the cell is left blank.