Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help ensure the accurate identification, collection and annual publication of data on the number of people living with young onset dementia.

The dementia diagnosis rate for patients aged 65 years old and over is calculated and published monthly via the Primary Care Dementia Data publication, which is available at the following link:

https://digital.nhs.uk/data-and-information/publications/statistical/primary-care-dementia-data

While the dementia diagnosis rate is not calculated for patients aged under 65 years old, the publication does include a monthly count of the number of patients aged 65 years old and under who do have a dementia diagnosis on their patient record, and this is expressed as a raw count and as a percentage of registered patients aged between zero and 64 years old.

Data quality is generally considered to be very good for all General Practice Extraction Service (GPES) extracts. Between 90 and 100% of practices in England participate each month. Data collected is 100% complete, as it is automated extract GPES extracts data for all patients who have specified codes on their record. Further information about the data quality for the statistical publication can be found at the following link:

https://digital.nhs.uk/data-and-information/publications/statistical/primary-care-dementia-data/primary-care-dementia-data-supporting-information/primary-care-dementia-data-data-quality

We will deliver the first ever Modern Service Framework for Frailty and Dementia to deliver rapid and significant improvements in quality of care and productivity. This will be informed by phase one of the independent commission into adult social care, which is expected this year.

In developing the Modern Service Framework for Frailty and Dementia, we are engaging with a wide group of partners to understand what should be included to ensure the best outcomes for people living with dementia. As part of this exercise, we are considering all options to help reduce variation, including reviewing data, metrics, and targets.