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Young onset dementia on the rise with 70,800 UK adults affected as health crisis deepens

New figures released today by charity Dementia UK, show a ‘hidden population’ of 70,800 people in the UK who are currently living with young onset dementia — a rise of 28,800 (69 per cent) since 2014.

In a recent study, researchers from the Neurology and Dementia Intelligence Team, Office for Health Improvement and Disparities, analysed datasets from GP practice records in England. By using an alternative method of identifying cases, they found that the estimated number of people with young onset dementia in England (where symptom onset occurs under the age of 65), represented an estimated 7.5 per cent of all those living with a dementia diagnosis. The findings, published in the Journal of Dementia Care, were used by Dementia UK to arrive at the ‘hidden population’ of 70,800.

This World Alzheimer’s Month, the charity is calling for better awareness of young onset dementia and the need for age-appropriate services and care. The charity is warning that the prevalence figures for young onset dementia could be even higher.

Dr Hilda Hayo, Chief Admiral Nurse and Chief Executive at Dementia UK, said: 

“We know that young onset dementia is poorly recognised and misdiagnosed which leads to delays in accessing crucial support. Worryingly, the figure of 70,800 adults who are estimated to be living with the condition in the UK, may just be the tip of the iceberg.

“Dementia is a huge and growing health crisis and with rising numbers, it is now more urgent than ever that families receive the specialist support they need.

“Right now, our specialist dementia nurses, known as Admiral Nurses, are providing life-changing support for families affected by all forms of dementia. I want to encourage all families affected by young onset dementia who are seeking support to visit our website for information and resources and to access our national Admiral Nurse Dementia Helpline and Clinics services.”

Dr Janet Carter, Associate Professor Old Age Psychiatry, UCL and Consultant Old Age Psychiatrist at North East London NHS Trust, who led the research, said:

“There is a misconception that dementia only affects older people and the figure released today using our findings as a basis, shows we need to do more to dispel this myth. Lack of crucial support could negatively impact on not just the individual living with young onset dementia, but also the whole family.”

66-year-old Chris Maddocks who lives in Eastbourne with her partner, was diagnosed with young onset vascular dementia in 2016 at the age of 60. In 2020, she was also diagnosed with Lewy body dementia. On both occasions, Chris was not referred to any services or given any information. She was left to search for answers on her own.

“I attended the Elderly Care Assessment Unit on my own, was given a diagnosis of young onset vascular dementia and told to go home to get my affairs in order. I felt like I had been given a death sentence. I cried for three months and became a prisoner in my home. My partner and I hit many brick walls trying to seek information and find the right support.

“I experienced the same after being diagnosed with Lewy body dementia and was not signposted to any services. Two weeks later, I was connected to an Admiral Nurse who finally gave me the answers that I was looking for. I was talking to somebody who understood what was happening and could explain a lot of the symptoms. And for the first time, it made sense. Without her experience and knowledge, my partner and I would have struggled to prepare for our future with dementia. Post-diagnosis, my Admiral Nurse was my lifeline.”

To find out more about young onset dementia, visit dementiauk.org/young-onset-dementia

Kirsty

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