Dementia is often spoken about as a condition of older age. And in many cases, that is true. But it is not the full picture.
Recent headlines, including the story of the “FTD Brothers”, have brought renewed attention to a lesser-discussed reality: dementia can, and does, affect younger people.
Their story is powerful, but it also highlights a wider issue, one that is often overlooked in both awareness campaigns and everyday conversations. With Dementia Awareness Week fast approaching, it feels like the right moment to join the conversation. Dementia does not just affect older people, and it is something we need to talk about more openly.
When dementia does not follow expectations
The story of the FTD Brothers has captured attention for good reason. It challenges what many people expect dementia to look like.
After losing their mother to frontotemporal dementia at a young age, both brothers underwent genetic testing and were found to carry the gene associated with the condition. This means they will live with FTD in their lifetime, most likely becoming symptomatic in their early 40s and losing their lives within around 10 years of diagnosis.
Since then, they have dedicated themselves to raising awareness. From taking on the London Marathon to planning a series of endurance challenges, including running 32 marathons in 32 days, their efforts are bringing national attention to a form of dementia that is still widely misunderstood.
Frontotemporal dementia, often referred to as FTD, tends to develop earlier than more commonly recognised forms of the condition. It can affect people in midlife and often presents through changes in behaviour, personality, and communication, rather than memory loss in the early stages.
The gap in understanding
There is still a strong assumption that dementia is something that always happens later in life. That assumption can create real barriers.
Younger people living with dementia may be misdiagnosed or face delays in getting the right support. Many are still working, raising families, or supporting others when symptoms begin to appear.
Services are often designed with older adults in mind. This can make it more difficult for younger individuals to access support that reflects their circumstances. In many cases, the signs are there. They simply do not fit the expected pattern.
Why awareness needs to go further
Dementia Awareness Week plays an important role in bringing attention to dementia. But for awareness to be meaningful, it needs to reflect the full reality of the condition. That includes recognising that dementia is not defined by age alone.
Greater awareness of early onset dementia can lead to earlier diagnosis, more appropriate support, and better informed professionals across health, care, and education.
The role of the workforce
For those working across adult social care, education, and wider support services, this shift in understanding is essential.
Supporting someone with dementia is not only about recognising memory loss. It requires an understanding of how the condition can present differently, particularly in younger individuals. This is where learning and development plays a critical role.
When awareness is combined with practical understanding, it leads to better decisions in real situations.
Moving beyond assumptions
The story of the FTD Brothers is a reminder that dementia does not always look the way we expect it to.
Broadening that understanding means recognising the diversity of experiences and ensuring that no one is overlooked because they do not fit the stereotype.
Turning awareness into action
Raising awareness is important. But what matters most is what follows.
For organisations, that means reflecting on whether current approaches truly account for the full spectrum of dementia.
Are teams equipped to recognise early onset presentations?
Are support systems flexible enough to meet different needs?
Is training enabling confident, informed decision making?
Dementia care is not one size fits all. And the more we understand, the better we can support the people living with it. If awareness is to lead to meaningful change, it must reflect the full reality of the condition.
Dementia does not always wait. Our understanding should not either.
If you would like to learn more about the FTD Brothers’ story or support their efforts, you can do so here.
