19,000 people in England could be living with undiagnosed young-onset dementia

Following the first ever publication of data confirming that 34,412 people in England have been diagnosed with young-onset dementia (dementia which first appears before the age of 65), the charity Alzheimer’s Society has raised concerns that not enough people are getting a diagnosis.

It says the true figure for the number affected may be closer to 53,606, with an estimated 19,194 living without a diagnosis and support.

NHS England released the previously unrecorded figures for the first time yesterday following campaigning this year from Alzheimer’s Society and other organisations.

James White, Alzheimer’s Society’s Head of National Influencing, said: “One in three people born today will develop dementia in their lifetime. Yet we know that many people aren’t being diagnosed, which means they’re not able to access vital support and treatments.

“It’s a common misconception for people to think of dementia as just an older person’s condition, and it’s even more challenging that the first signs of young-onset dementia can be hard to recognise or not obvious. Often, they’re put down to other factors such as stress, difficulties with relationships or work, or the menopause.

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

“Based on estimates we share with other dementia charities, 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 their families struggling to get by without the right support and help.

“We know that getting a dementia diagnosis can be daunting, but 90% of people told us that they benefitted from a diagnosis as it helped them do things like plan for the future and access support. We need more people to know the symptoms and to seek help from their GP. We’re also urging the Government to make dementia a priority – having access to an early, accurate dementia diagnosis is absolutely vital.”

Fran Murt, 67, who is living with young-onset Alzheimer’s disease, and worked as a nurse before her diagnosis at age 63, said: “I just knew I wasn’t me. I was making mistakes at work that I would never have made before. I went to do a blood pressure check and I couldn’t remember how to put the cuff on.

“I went to the doctors and asked them to sign me off work, because I was scared I was going to make more serious mistakes. I spent about 18 months in limbo before I was finally diagnosed, and it was a relief to be honest. I had been told it could be stress or the menopause, but I knew it was dementia, so I was glad to have it confirmed so I could get the right support.”

Like all people with dementia, younger people may experience a wide range of symptoms, especially in the early stages of dementia. However, they are likely to need different support to older people. Younger people with dementia are less likely to have memory loss as one of their first symptoms but may notice that their movement or balance is affected. Other early symptoms could include changes in behaviour, language, vision or personality.

If you’re concerned about yourself or a loved one, visit Alzheimers.org.uk for help and advice.