I think I am at risk of fFTD. What next?

This page is here to guide you on what to do if you think you or your family may be at risk of familial frontotemporal dementia (fFTD).

When living at risk of fFTD, people naturally ask questions such as what will happen next? Will I inherit this condition from my parents and can I pass it on to my children? Should I get tested? What support is available to me?

If you think you are at risk of fFTD, we have provided some information that you may find helpful.

Genetic testing and counselling

In families where a gene abnormality is known or suspected, expert genetic advice is important.

If someone is worried about their risk of developing familial FTD or wishes to discuss it further, their GP will be able to refer them to a specialist genetic counselling service to discuss their concerns and arrange genetic testing if needed.

Genetic counselling is not psychological counselling. It is the process of a specialist explaining all of the facts and options to an individual as clearly as possible, so that they may make an informed decision about whether to proceed with genetic testing.

The results of any genetic test have important implications not only for the person being tested but also for the rest of the family. It is important to discuss these carefully with a specialist who has expertise in genetic counselling and is familiar with the family, before any genetic tests are performed.

The specialist will ask about family history of similar illnesses. If they are concerned that the illness may be inherited, they can test for known mutations. Where tests are available, a blood sample is taken, although it can often take several months to get a result. The person’s next of kin would be included in the counselling and testing process. Specific consent is needed to perform genetic tests.

If the precise gene abnormality is not known, researchers may be interested in identifying it, and will need DNA from at least one affected family member. Identifying a new gene abnormality can take many months or years and is not always possible.

If the precise gene abnormality affecting someone is known, it is sometimes possible to test the person’s adult children to see whether they have inherited it and are likely to develop FTD. Being tested is a very difficult decision with no right or wrong answer, and counselling and support is available and recommended throughout the process.

For more information on genetic testing and dementia you may also find the Alzheimer’s Society website useful.

Community support

The process for getting a diagnosis of fFTD can be frustrating and distressing for families. We run a Support Group for family members who are at risk of a familial form of FTD. Meetings provide an opportunity to meet others in similar situations as well as a range of professionals to get advice and support. If you are a carer or family member caring for someone living with fFTD, then there are separate FTD Support Group meetings available to you. Information on all upcoming meetings can be found on our Meetings page.

As fFTD is so rare and the symptoms can vary from person to person, it may be hard for people with fFTD to receive the correct diagnosis. This can be frustrating and distressing. By increasing awareness and understanding of fFTD, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.

< Back to fFTD main page