Carter, Janet; (2022) Prevalence of all cause young onset dementia and time lived with dementia: analysis of primary care health records. Journal of Dementia Care , 30 (3) pp. 1-5.

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Abstract

Our objectives were to calculate the prevalence of YOD – defined as dementia diagnosed under the age of 65 – using primary care electronic health records in England, and to determine the length of time lived with dementia in relation to current age. We found that, of 441,909 people in the Recorded Dementia Diagnosis dataset for England at the end of September 2020, an estimated 33,345 (7.5%) were individuals living with a diagnosis of young onset dementia. Estimated prevalence of YOD (those aged between 30 and 64) was 92 per 100,000 of the general population. Our findings show that 55.1% of those currently living with dementia aged between 65 and 69 years were diagnosed under the age of 65. Of this age group, half have lived with dementia for three years or less, 25% for more than five years, and 5% in excess of 12 years to a maximum of 28 years. The estimated prevalence figure for YOD in this analysis provides a truer estimate of people living with YOD in England because it includes all people with this diagnosis irrespective of their current age. The study legitimises the view that an expansion in focus is required to identify a “hidden population” of individuals with YOD who may have been living with dementia for some years, and for whom specific health and social care needs remain unmet. This additional insight can be achieved by improving the Recorded Dementia Diagnosis dataset, routinely published by NHS Digital, to include the age at diagnosis of the current cases with dementia.

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