First ever data released on YOD

For the first time NHS England has released data revealing that 34,412 people in England have been diagnosed with young onset dementia (YOD).  But the NHS estimates that an additional 19,194 people in this age group may be undiagnosed, putting the potential total population of people with YOD at 53,606.

“Until now, NHS England didn’t have a clear picture of how many people have young onset dementia as they weren’t fully collating diagnoses,” said Alzheimer’s Society head of national influencing James White.

“With this new data, we’re on the way to building a better understanding, but we believe the numbers don’t reflect the true picture,” he added.

“We believe there is a really worrying gap between the thousands of people in England we estimate are living with young onset dementia, and those that have actually been diagnosed.  That leaves friends, loved ones, colleagues, and families struggling to get by without the right support and help.”

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