Some people with FTD have a family history of dementia and the condition may be inherited in some of these families.

Some people with frontotemporal dementia have a family history of the condition. Directly inherited dementia is rare, but in around 30% of FTD cases a family history of the condition is known. In these cases the cause is likely to be genetic and this is known as familial frontotemporal dementia.

For behavioural variant FTD, one in every two or three people with the disease could have a family history. This figure is thought to be much lower for other forms of frontotemporal dementia. It is important to note that most cases of FTD do not have a genetic basis.

Research has found a number of faulty genes that can cause inherited forms of FTD, including tau, progranulin and C9ORF72. If your doctor suspects a strong family history, you may be offered genetic counselling and testing to see if you carry the gene too. Their family members can also be referred for genetic counselling and testing.

For more information see our genes and dementia information.

In cases of FTD where there is no family history, the risk factors for the disease are not yet fully understood. Because FTD is a rarer type of dementia it is harder for researchers to study its causes. To reduce our risk of other types of dementia we can take steps to look after our brain health, and this may well be important for the risk of non-genetic FTD too.

Read information about reducing your risk of dementia here.

What is frontotemporal dementia?

Information in this introductory booklet is for anyone who wants to know more about frontotemporal dementia (FTD). This includes people living with FTD, their carers, families and friends.

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Alzheimer’s Research UK has a wide range of information about dementia. Order booklets or download them from our online form.

This information was updated in December 2021 and is due for review in January 2024. it was written by Alzheimer’s Research UK’s Information Services team with input from lay and expert reviewers. Please get in touch if you’d like a version with references or in a different format.

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