Think dementia only happens when you’re old? Think again. Editor Melissa Holmes speaks to someone living with young onset dementia, and asks: how can we look after our brains – and what should we know about dementia at any age?
Dementia is often thought of as something that happens in later life. But dementia does not have an age limit. For people who develop it before 65 – known as young onset dementia – getting a diagnosis can be a long, frustrating journey.
“It actually took me over five years to get a diagnosis,” says Julie. Now 63, Julie was diagnosed at 54. She started noticing symptoms in her late 40s, while working as a social worker on an older person’s team. “I was in a paperless office, so we were relying completely on computers,” she explains. “Sometimes I would go into the office, sit at my desk, and look at the computer. It’d take me a while to figure out how to turn it on.”
SYMPTOMS DISMISSED
Initially, Julie’s doctor dismissed her symptoms as depression, then menopause. Her experience highlights one of the biggest misconceptions surrounding young onset dementia: that it’s an older person’s condition. But more than 70,800 people in the UK are living with young onset dementia, according to Dementia UK.
NOT AGE-RELATED
“It’s not age-related. Anyone can get dementia,” says Gina Awad, whose second book, drawing on her experiences of advocating for and supporting people and families living with dementia, is due to be published in October.
Dementia is an umbrella term for symptoms caused by damage to the brain, and symptoms depend on which areas of the brain are affected. “You can develop dementia at any age, and the symptoms are not always memory-related,” says Julie. Gina explains: “I’ve got a friend who’s living with a rare dementia called posterior cortical atrophy, which she was diagnosed with in her early 60s. It gives a different presentation, because it doesn’t start with memory loss.”
For younger people, early symptoms can include changes in language, behaviour, personality, vision, movement or coordination, as well as memory problems. Because these symptoms can be mistaken for stress, depression, relationship difficulties, work pressures or, in some cases – like Julie – the menopause, diagnosis can be delayed.
There is no single test for dementia. A GP may take a detailed medical history, carry out cognitive tests, and arrange blood tests or other investigations before referring someone to a memory clinic. For Julie, finally having a diagnosis brought an unexpected feeling. “It was actually quite a relief,” she admits. “Once you’ve got a label, a diagnosis, you can decide what you’re going to do.”
LOOK TO THE FUTURE
That sense of being able to make plans is important. A diagnosis of young onset dementia can have implications for employment, relationships, finances and family life. Younger people may also find that dementia services are not always designed around their needs. Getting the right support, and making plans for the future are something Gina strongly recommends: “Planning ahead is really important.” But the future is only part of the picture. What happens every day – even right now – can make a difference to how we look after our brains.
For Julie, staying mentally and socially active has become a key part of living well with dementia. “Keeping your brain active and getting involved with other people acts like a mental gym,” she says. That doesn’t have to mean doing complicated brain-training exercises. Reading, learning something new, pursuing hobbies, having conversations, volunteering, and maintaining friendships can all provide opportunities for mental and social engagement.
LISTEN UP
Gina takes a similarly broad approach: “Hearing checks, staying socially connected, movement and exercise, purpose and belonging, managing health conditions, getting quality sleep – all these contribute to supporting our brains throughout life.”
Exercise supports cardiovascular health, which matters because conditions affecting the heart and blood vessels can also impact the brain. Regular hearing and eyesight checks can identify problems that may affect communication and social participation. Staying connected with other people can provide stimulation, companionship and a sense of belonging. And managing conditions such as high blood pressure and diabetes is an important part of protecting long-term health.
None of this means that dementia can always be prevented. Some risk factors, like age and genetics, can’t be changed, and many people who develop dementia have no obvious explanation for why it happened.
LIVING LIFE
Perhaps the most important message is not to let fear of dementia stop you from living your life. Julie, who has no immediate family support, is particularly aware of the importance of community. “It’s assumed that everybody has an informal carer, but that’s not always the case,” she says. She’s recently moved to sheltered housing, and is involved with DEEP – the Dementia Engagement and Empowerment Project – which helps her connect with other people who understand the experience of living with dementia.
Julie says: “If you receive a diagnosis, please don’t be put off by all the negative ideas. People tend to have a very dated view of dementia.” Meanwhile, Gina emphasises the importance of “Seeing the person with dementia as a person – focusing on what they can do, not what they can’t do.” She also places value on the importance of planning ahead and “having the important conversations, so you can get on with living!”
Keeping your brain healthy isn’t simply about reducing your risk of developing dementia. It’s about staying connected, curious, and active – and making the most of the life you have, at every age.