FTD Awareness Week is an important opportunity to increase understanding of frontotemporal dementia (FTD), challenge misconceptions, and, most importantly, listen to the voices of people living with FTD and their families.

FTD can affect behaviour, personality, language and movement, and its symptoms and progression can look very different from one person to another. This diversity can make FTD difficult for others to recognise and understand. Raising awareness is therefore essential – not only to support earlier recognition and diagnosis, but also to help people with FTD and their families feel understood and included.

Members of the PREDICTFTD Patient Involvement Board (PIB) have shared their experiences and reflections on why greater awareness matters.

Eamonn Dobbyn reminds us not to define people by their diagnosis:
“We can still do lots of things. People need to understand that being diagnosed doesn’t mean we have lost our marbles. We are just a little bit slower than we were, that is all. Just bear with us.”

Nina and Petri highlight how differently FTD can affect each individual:
“It is very difficult to explain to people that FTD will present in a different way in each person. You give up on some things, but you are still doing many things like before, such as picking berries or renovating the summer house. It is not the end of our life, we just have to find a way to live it. Memory issues aren't the most visible part of the lives of people with FTD. FTD differs from other memory disorders in this way, which is why raising awareness is so important.”

For families, greater awareness can also help make sense of changes that may otherwise be frightening and confusing. Carmel reflects:
“If we had been alerted to the symptoms, in particular Mum's social behavioural changes such as inappropriate use of language and some aggression, we would have had a much better understanding of what was happening. We had no understanding and Mum must have been terrified.”
Steve points to the misconceptions that people with FTD continue to face:
“People don’t know how to handle any diagnosis of dementia, let alone FTD. They instantly think you’ve got an old person’s condition, that you have suddenly lost your memory. Suddenly, you can’t speak for yourself, you can’t hear, you can’t act: no-one knows how to react around you. But we are out there, challenging these perceptions everyday.”

And Roslynn reminds us of something simple but important – to meet the person where they are:
“You cannot always understand what is happening in the initial stages - until you are certain with the diagnosis, but even when the diagnosis is there. Sometimes my mum would have okayish moments as well! So, what I would say is, just don’t rush. Be with the person at that moment, in that circumstance, in that situation.”

During FTD Awareness Week, PREDICTFTD joins the international FTD community in raising awareness and challenging stereotypes. These voices remind us that behind every diagnosis is a person whose abilities, relationships, everyday activities and experiences continue to matter.