The ‘real-life action heroes’ fighting frontotemporal dementia

The ‘real-life action heroes’ fighting frontotemporal dementia 

When her husband was diagnosed with frontotemporal dementia, Emma Heming Willis was given nothing more than a pamphlet. 

At an international conference in Amsterdam focusing on frontotemporal dementias, Emma the wife of film star Bruce Willis, thanked the researchers in the field and told those assembled they were the ‘real-life action heroes’. 

“You give us something incredibly important – you give us hope,” she added. 

At the International Society for Frontotemporal Dementias (ISFTD) conference there was a real sense of hope. 

For the first time there were sessions on clinical trials, researchers Alzheimer’s Society spoke to were excited about how the field is progressing and there were some riveting sessions detailing what researchers have been discovering. 

How the disease starts 

What’s clear is that huge efforts are being made by the community to understand how the different types of FTD start. Talks focused on the role of proteins including TDP-43, Annexin 11, TMEM106B and tau. Several teams were excited to report what they had learnt about these proteins and how this new knowledge would inform their next steps. 

One professor gave an insight into the work of her team which has identified a new genetic risk factor for FTD-U, which is a rare type of FTD. She reported that having this different form of the gene won’t always cause FTD-U but could be an important new development in FTD research. 

There were several talks on the need to develop tests which can identify biological markers – signs found in blood or other bodily fluids for example – which can help to accurately diagnose FTD. There is a real need for FTD ‘biomarkers’ but discovering them is challenging. 

Tests and assessments 

Cognitive and written tests are the backbone of diagnosis but are often in English. It was fantastic to hear how researchers are focusing on making sure that tests and assessments are suitable for a wide range of people no matter their language, educational background, culture or where they live. A lot of researchers emphasized the importance of having tools which are specifically designed for people from different cultures, languages and backgrounds in order to make better quality assessments. 

One researcher made the point that culture and background can affect how quickly symptoms are recognised and this can lead to a delay in diagnosis. She gave an example of how, when researchers understood the background of a patient, it was only then they could communicate with her and make a diagnosis. 

Patient and carer voice 

Emma Heming Willis took part in a panel discussion on stigma in which she shared her and Bruce’s experience since his diagnosis in 2022.  

She is determined to raise the profile of this type of dementia and wondered if his legacy might be different than the one they had planned. If, in fact, FTD might be known in the future as ‘Bruce Willis Disease’. What seems certain is that she will be an important voice for raising awareness of FTD and particularly the need to listen to and support caregivers. 

The panel felt there was too little awareness of FTD amongst the general public but also amongst medical professionals and funders, which prevents progress and leads to a lack of support. 

Reducing stigma and increasing awareness were themes which ran throughout the conference. Early diagnosis, support following a diagnosis, involvement of people with FTD and their caregivers and keeping the experiences of people at the heart of research were raised as some of the most important aspects of research. 

Clinical trials 

Conducting clinical trials in FTD is vital – but incredibly difficult due to the low numbers of people participating in research. One trial recruited just 95 patients and it took them four years to do so. They believe their findings are robust and would like to widen the trial to what is called a Phase 3 trial but face practical problems in recruiting participants and in attracting funding.  

FTD is considered a rare disease where genetics often play a large role. However, genetic testing is not given to patients as standard which leads to difficulties in giving an accurate diagnosis and signing people up for trials. 

In spite of the challenge of setting up clinical trials there was a hopeful message at ISFTD24. Two years ago, at the last conference, there were no sessions on clinical trials but the research has moved on and the field of clinical trials in FTD is gaining pace. 

The field of FTD research is powered by researchers working together. There was a real sense of openness and willingness to share knowledge and collaborate with others.  

It’s exactly what is needed. 

It was inspiring to be around hundreds of people dedicated to progressing FTD research and to hear about the exciting developments taking place. Research will beat dementia!