Charity warns 70,800 people living with young onset dementia may be 'tip of the iceberg'

With almost 71,000 people in the UK living with young onset dementia, a leading charity warns this figure could be higher as the condition is often "poorly recognised" and "misdiagnosed".

The new figures released by Dementia UK show the figure for people living with young onset dementia in 2014 was 42,000. In 2022, that figure has seen a rise of 28,800 (69 per cent).

With World Alzheimer’s Month in September, Dementia UK is calling for better awareness of young onset dementia plus the need for age-appropriate services and care.

'Dementia is a huge and growing health crisis'

Dr Hilda Hayo, chief admiral nurse and chief executive at Dementia UK, said: “We know 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.”

’I felt like I had been given a death sentence’

According to Dementia UK, dementia is described as ‘young onset’ when symptoms develop before the age of 65, usually between 30 to 65 years of age.

As dementia is frequently, and wrongly, thought of as a condition that is just associated with old age, the early symptoms of young onset dementia are not always recognised and may be attributed to other causes including depression, stress, menopause, physical health problems and relationship issues.

This can lead to a significant delay (on average four years) in getting an accurate diagnosis and access to appropriate support. This can have a negative impact on not just the person with dementia’s life but also the whole family.

Chris Maddocks, 66, lives in Eastbourne with her partner and was diagnosed with young onset vascular dementia.

In 2020, she was also diagnosed with Lewy body dementia. On both occasions, Ms Maddocks was not referred to any services or given any information. She was left to search for answers on her own.

Ms Maddocks said: “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."

'There is a misconception dementia only affects older people'

Researchers analysed data from GP practice records in England. By using an alternative method of identifying cases, they found the estimated number of people who were under the age of 65 with young onset dementia in England, represented an estimated seven and a half per cent of all those living with a dementia diagnosis. The findings, published in the Journal of Dementia Care, were used by Dementia UK.

Dr Janet Carter, associate professor of Old Age Psychiatry at UCL, who led the research, said: “There is a misconception 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.”

To read our advice section regarding people living with dementia in their own homes and their loved ones, click here