Who gets frontotemporal dementia?

Researchers don't know exactly what causes a person to develop frontotemporal dementia (FTD). However, there are some things that are known to affect a person’s chances of getting FTD, such as certain genes.

What causes FTD?

While researchers know a lot about how FTD develops in the brain, they still don’t fully understand why some people get FTD and others don’t. This is mainly because FTD is a less common type of dementia – so it is harder to study its causes.

However, there are some things that are known to affect a person’s chances of getting FTD.

Does FTD affect younger people?

Frontotemporal dementia is mostly diagnosed between the ages of 45 and 65 (though it can affect people younger or older than this). This is much younger than more common types of dementia such as Alzheimer’s disease, which mostly affects people over 65.

Being diagnosed at a younger age can bring someone a very different set of challenges. A person under 65 may still be working, have a mortgage and other bills to pay, or have children who still rely on them. This means they may need different services and support.

What affects a person's chances of getting FTD?

Unlike some other types of dementia, FTD seems to affect men and women about equally. However, there is not enough evidence to know if certain lifestyle factors, such as smoking, drinking alcohol, or not being physically active can increase a person’s risk of getting FTD.

Researchers also don’t know whether other long-term health conditions, such as diabetes or high blood pressure, can make someone more likely to develop the condition.

Can genes cause FTD?

FTD is much more likely to run in families than more common forms of dementia. Find out more about the genes that can cause FTD below.

Familial genes

In some families, there is a single faulty gene that will definitely cause FTD if it is passed down from a parent to a child. This is known as ‘familial FTD’.

About 10 to 15 in every 100 people with FTD have this type. Any child of a person with familial FTD has a 1 in 2 chance of getting the same gene. It most often causes behavioural variant FTD.

Can a person be tested for familial genes?

If a person has a close family member with FTD they may want to know if they are carrying a familial FTD gene. This may be for a number of reasons – for example, if they plan to have children.

A person can ask their GP to refer them to a local NHS genetics service. This service provides pre-test genetic counselling, which can help a person to consider all the possible effects of finding out if they have a familial FTD gene.

This is important because test results can have a serious impact on a person’s mental wellbeing and that of their family. It can also affect a person’s work and personal relationships.

'Susceptibility' genes

There are types of genes (sometimes known as ‘susceptibility’ genes) that can increase a person’s chances of getting FTD.

However, unlike familial genes, they don’t always cause a person to develop FTD.

Can a person be tested for 'susceptibility' genes?

Scientists know a lot less about ‘susceptibility’ genes than they do about ‘familial’ genes. This means it’s not yet possible for most people to find out if they are carrying a ‘susceptibility’ gene.

Genes and dementia

Find out how genes can cause dementia and get advice on genetic testing.

Read more
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