World FTD Awareness Week logoThis week is World FTD Awareness Week, which runs 23 – 30 September 2018.

FTD (Frontotemporal Degeneration or Dementia) is a progressive disorder of the brain that affects 10 people out of every 100,000 in the UK. It can affect behaviour, language skills and movement.

People with FTD are typically younger and display different symptoms to Alzheimer’s, so the condition often goes undiagnosed.

That’s why research into FTD is so vital.

Finding the right volunteers

The Longitudinal Investigation of Frontotemporal Dementia (LIFTD) study aims to improve understanding of FTD and help measure the effectiveness of future treatments.

Brain scans showing the difference between FTD and Alzheimer's

It looks at how people’s thoughts, feelings, and behaviours change, and how this relates to changes in the brain.

In order to get reliable results, researchers need to compare the results of volunteers who have FTD with results from volunteers who don’t. Using Join Dementia Research, the team have been able to match with lots of people who meet their study criteria.

This means the team can contact lots of people in a short space of time. Join Dementia Research also makes it easier to contact people from a range of backgrounds, giving the study a more accurate representation of the population.

How volunteers are helping

Volunteers visit the research team for two days. They each have a clinical assessment with a doctor, give blood and urine samples, have an MRI scan and complete some psychology tasks.

A lumbar puncture, where a needle is inserted into the lower part of the spine to collect cerebrospinal fluid

Volunteers undergo a lumbar puncture to help improve FTD diagnosis.

If they are willing, volunteers also have a lumbar puncture. This is a procedure in which a needle is inserted into the lower part of the spine to collect cerebrospinal fluid – the fluid which surrounds the brain.

The lumbar puncture is extremely valuable. It will potentially identify biomarkers which would help to more accurately diagnose FTD and track its progression.

However, it is often difficult to find people to voluntarily undergo a lumbar puncture. Join Dementia Research was particularly helpful in finding healthy participants who were willing to do so.

The healthy control cerebrospinal fluid collected is a rare insight, and particularly precious. It allows the research team to look at the differences between samples from people with and without FTD. This is crucial to understand the disease progression.

As a result the research team hope to gain new insights that will help with the diagnosis and progress of FTD now and in the future.

Get involved

You can see if you are eligible for this study or others around the nation by logging into your Join Dementia Research account.

Not registered with Join Dementia Research? Why not sign up today?