Our resident Ian Burton has been living with Young Onset Dementia for 11 years. On Young Onset Dementia Awareness Day, his wife urged families affected by the condition to seek support as soon as possible and hopes her advice will encourage others to ask for help.

Ian, 61, is Wendy Burton’s husband. He is a former soldier and has been living with frontotemporal dementia for over a decade, the same form of dementia that Bruce Willis was diagnosed with in 2023. Ian moved into our home, Barrowhill Hall nine years ago. We are a 74-bedroom residential and nursing home on the Derbyshire/Staffordshire border. He joined as a resident in our separate household, Churnet Lodge, which is tailored specifically for people living with Young Onset Dementia, where diagnosis occurs under the age of 65 and care needs can be very different from those diagnosed in later life.

“My advice to anyone with a diagnosis of dementia before the age of 65 is to actively seek help from professional support services, including carer support, as soon as you can,” Wendy advised. “A diagnosis at any age is very difficult and very challenging for the person themselves and for family and friends, but when that person is younger the impact is dramatic. It can often involve a young family, the loss of a career and income resulting in financial challenges and a very uncertain future with many plans for retirement wiped out.”

According to Dementia UK, over 70,000 people in the UK are living with Young Onset Dementia. As a rarer form, it can be more difficult to diagnose with the average diagnosis time being 4.4 years, double that of people diagnosed over the age of 65.

Since Ian’s diagnosis, Wendy became a carer and knowing Ian is safely looked after has been able to dedicate her time to raising awareness about rare forms of dementia. Her practical steps and recommendations for support include getting the legal requirements in place such as a will and power of attorney for health and welfare as well as housing and finance.

“Speak to a solicitor if you own your own home to change the tenancy and you may be eligible for discounts with utility companies and Personal Independent Payment (PIP),” she also suggested.

“You also may be able to get discounts via a Carers Card for days out – it’s important to get out and about. If everything is put in place early you can then go on living and enjoying special times.”

Ian left the 22 Signal Regiment in 2006 after 22 years of service and went on to become a technical support worker for Derbyshire police. As he approached his 50th birthday, signs of his condition began to emerge, and he was medically retired after his diagnosis.

“Finding a care home for someone under the age of 65 can be very challenging,” she said. “When Ian needed to move into full time care we were lucky. Churnet Lodge part of Barrowhill Hall had just opened as a specialist home for Young Onset Dementia. They have been able to support Ian through all of the changes in care as his dementia has progressed. The team have been a pillar of support, and I can always turn to them for information too.”

The tailored care at Churnet Lodge includes activities designed for younger people, a modern décor and wide corridors to suit residents who are often more mobile. Our dedicated team also supports residents’ loved ones, families and friends, making them part of the household too. Our specialist skills mean each resident receives high-quality, personalised care and our home is well equipped to cater for residents and their evolving needs. Ian is currently living in the main building, so he is closer to the nurses.

“My aim is for people to ask what type of dementia someone has, as opposed to assuming it’s Alzheimer’s” Wendy continued. “Bruce Willis’ diagnosis has helped to raise awareness that dementia doesn’t just affect the elderly, and it isn’t just about memory loss – it can affect people differently. The greater the awareness the better the support can be.”

“When Ian was diagnosed, I read as much as I could to educate myself and our daughters about his dementia and how to support Ian and each other. I wasn’t someone who liked going to groups, but I took myself out of my comfort zone and attended specialist groups for Young Onset Dementia and I can honestly say it was the best thing I did. That peer support is invaluable.”

“Everyone thinks with dementia that somebody loses their memory and that’s the main thing, but with frontotemporal dementia that’s very often the last thing to go. For Ian it started with changes in character and wandering off from his workplace. When Ian had his first memory test he scored 29 out of 30.”

Wendy, their three daughters and Ian’s grandchildren all visit Ian regularly. They open their presents together here at the home on Christmas morning and our team helps the family to create special moments – from celebrating Ian’s 60^th birthday with a big party last year, to arranging trips out, live entertainment and animal visits.

Our care home manager, Dania Meadows, said, “It’s devastating to see the person that you love disappear in front of you, maybe you have plans to travel or are at the peak of your career – it comes at the time when nobody is suspecting.

“Education around dementia is incredibly important and people like Wendy are integral to raising awareness and it’s been a privilege to be able to care for Ian during his time here. He’s been with us for nine years and we are able to cater for him as his needs change.

“We do everything we can to provide outstanding care, make our residents smile every day, and give reassurance to families to try and alleviate their worries and concerns about their dementia journeys. We will continue to support our residents and their families every step of the way.”