In the second of our blog series looking at less common types of dementia, we take a look at what research is ongoing into frontotemporal dementia (previously also known as Pick’s disease).
What is frontotemporal dementia?
Frontotemporal dementia gets its name because it affects the frontal and temporal lobes of the brain. These parts of the brain are responsible for aspects such as behaviour, planning, understanding words and recognising faces. This means that people affected by frontotemporal dementia often have symptoms related to these aspects, for example changes in behaviour.
Different types of frontotemporal dementia include behavioural variant FTD and primary progressive aphasia. There are currently no treatments that can stop or slow down any form of frontotemporal dementia.
Frontotemporal dementia is relatively rare, but is a significant cause of dementia in younger people. Many people will develop the condition in their 40s and 50s, sometimes even in their 30s.
What we’re looking for
Development of frontotemporal dementia is linked to toxic clumps of proteins that are damaging to brain cells. Two proteins of particular interest to researchers are called tau and TDP-43. As some (but not all) cases can run in families, there is also a great deal of research going into understanding the genetics of the condition. The genes that have been most strongly linked to frontotemporal dementia are called MAPT, GRN and C9orf72.
Many of Alzheimer’s Society’s researchers are working towards understanding frontotemporal dementia at the genetic and molecular level. For example, Dr Kurt de Vos at the University of Sheffield and Drs Ryan West and David Hicks at the University of Manchester are all working with cells in the lab or with fruit flies (which surprisingly give a really good insight into how genes work!) to uncover important information about how these genes and proteins influence the development of frontotemporal dementia.
Better understanding of the genetic changes and the effects these changes have on brain cells will help researchers to identify mechanisms and targets that could be suitable for the development of treatments.
Spotting it early
The only way to develop much-needed treatments for people with frontotemporal dementia is to enrol appropriate people in clinical trials that are testing potential therapies. Researchers need to identify people who are affected by the condition as soon as possible to give the best chance of the potential treatment being successful and to give the maximum amount of benefit to the person affected.
Professor Jason Warren and Dr Jon Rohrer at UCL have been developing a large programme of work to better understand frontotemporal dementia. This includes a project run by Professor Warren and funded by Alzheimer’s Society that uses brain scans to better identify frontotemporal dementia. These scans can tell us a lot about a person’s brain health, including whether their brain is shrinking or if there are any signs of damage. Professor Warren and his team can link changes seen on brain scans with other symptoms of the condition to understand what is happening in people who are affected. This in turn will help diagnosis and early detection of frontotemporal dementia, allowing people to be enrolled in trials sooner.
Dr Rohrer’s team are working on developing new memory and thinking tests, brain imaging and biological signals that will be used in drug trials. These tests will tell researchers and doctors when to start any treatment and whether those treatments are working. Dr Rohrer’s PhD student Katrina Dick, who is funded by Alzheimer’s Society, is developing a computer-based test that can help to identify subtle changes in thinking in people at risk of developing the genetic version of the condition. Katrina also co-ordinates the international Genetic FTD Initiative (GENFI).
Taking part in studies
Dr Charles Marshall works as part of the UCL team, who are looking for people to take part in their studies. He explains:
The team at UCL are working across lots of specialities to understand frontotemporal dementia better and to improve the chances of finding a treatment.
“We are looking for people with behavioural frontotemporal dementia or primary progressive aphasia (or those who know that one of these conditions runs in their family) to come for annual research visits, usually for two days. During this time they have scans, blood tests, detailed psychological testing and are given the option of having a lumbar puncture (spinal tap).
“We may also ask participants whether they would also like to take part in experiments designed to find out more about what is happening in the brain in frontotemporal dementia, and how particular symptoms arise. These can be fun, and usually involve watching videos or listening to music and other sounds on a computer, sometimes whilst in the MRI scanner.
“All this information allows us to find better ways to understand symptoms, diagnose and monitor frontotemporal dementia, including finding ways to measure whether treatments are working so that we can start planning trials of new medications.”
If you have frontotemporal dementia or have a family history of frontotemporal dementia and are interested in taking part in the UCL studies, please email [email protected]
People with and without dementia can register their interest in taking part in studies by signing up to Join Dementia Research