Recently, members of the FTDtalk team were a part of an exciting project, whereby a Genetic Frontotemporal dementia Initiative (GENFI) study research visit was filmed for the Channel 4 documentary Love, Loss, and Dementia, which aired on the 2nd of October 2024. Each GENFI research visit is crucial for increasing our understanding of frontotemporal dementia (FTD), with the aim of identifying markers of the earliest changes in disease and allow its progression to be tracked. Further, they are an opportunity to connect with those who are affected by FTD.
A Spotlight on Frontotemporal Dementia
FTD is a lesser-known form of dementia that primarily affects the frontal and temporal lobes of the brain, leading to changes in personality, behaviour, and language. The disease commonly impacts individuals before the age of 60 (referred to as young-onset dementia), creating unique challenges for individuals and their families. Despite its profound effects, public awareness of FTD remains limited. Accordingly, documentary’s like Love, Loss, and Dementia , that are shining a compassionate light on the lives of those affected by dementia, are important in the effort to break down stigma and promote understanding.
Behind the Scenes of the Documentary
The documentary shows key moments of an annual GENFI research visit, where FTDtalk team member Phoebe completes a series of assessments with our participant, including cognitive tests, eye tracking, and an MRI scan. A medical assessment and several digital tasks using an iPad and smart watch are also completed. The documentary captured not only the scientific process but the personal connections between Jordan Adams (participant) and their family that make this work so powerful. The documentary also highlighted a discussion between Professor Jon Rohrer and Jordan Adams, where they talk about the future of clinical trials in FTD and the efforts being made towards finding a cure.
Jordan’s courage and openness is inspiring. Together with his brother, the ‘FTD Brothers’ raise awareness of FTD across the UK. The FTD brothers’ willingness to share their journey undoubtedly helps others who are affected by dementia feel less alone. We were touched by their story and are grateful for the opportunity to be a part of a documentary that amplifies the voices of those living with dementia.
Why it matters
Being involved in this documentary was a powerful reminder of why the team do what we do. The personal stories of those affected by dementia are at the heart of ‘Love, Loss, and Dementia’, including Anna Richardson’s account of her father’s experience with Alzheimer’s disease – a common cause of dementia primarily affecting memory.
The documentary underscores the impact dementia has on individuals and families, while also shining a light on the critical research efforts aimed at understanding and, one day, curing it. Every research visit represents an important step towards a future where those affected by dementia, including FTD, have access to effective treatments.
If you have watched the documentary and are curious about research visits as part of the GENFI study, click the link below for more information
Participate
If you missed the documentary, you can stream it now on Channel 4.
Amelia Blesius and Phoebe Foster, on behalf of the FTD talk team.
Keep up to date on all things research by following us on twitter – @FTDtalk / @GENFI1 and Instagram
