FTD support group

Projects & Events of Interest

GENetic FTD Initiative (GENFI)

Are you part of a family with a genetic form of frontotemporal dementia or primary progressive aphasia?

We are just starting a new study of genetic FTD and PPA. Anyone who is a first-degree relative of someone with a genetic form of FTD or PPA would be eligible to be in the study (a brother, sister, son or daughter). The genes we are specifically looking at are progranulin andtau and also people with motor neurone disease in the family. We are also studying people who are affected with genetic FTD or PPA. The study involves some psychology tests, a brain scan and a blood test over the period of a day.

If you would like any further information please contact Dr Jonathan Rohrer (University College London) via email at j.rohrer@ucl.ac.uk (opens email).

Behavioural variant FTD: Experiences of caring

Zoe Rigg is a trainee clinical psychologist at Canterbury Christ Church University with an interest in the experiences of caring for someone with a diagnosis of behavioural variant frontotemporal dementia. She is particularly interested in how carers and relatives manage difficult circumstances and whether these experiences have changed over time since receiving the diagnosis.

Zoe would like to conduct interviews with carers/ relatives who are interested. These interviews will be conducted at a location convenient for the participant. Zoe is willing to travel, ideally throughout the SouthEast or North West regions.

If you are interested in this study and would like more information, please contact Zoe on 07846577946, or via email at z.rigg16@canterbury.ac.uk (opens email).