What treatment and support is there for frontotemporal dementia?

Supporting a person with FTD often involves a team of professionals that can include a:

• GP
• community nurse
• psychiatrist
• speech and language therapist
• neurologist
• social worker.

When someone has problems with movement or co-ordination, support from a physiotherapist or occupational therapist can also help.

Support groups can offer useful advice and emotional support to people living with FTD and those who care for them.

There are specialist support groups for younger people with dementia or FTD and for people affected by familial FTD (see our 'FTD - other resources' page for details).

Spending time with other people in this way can also help if a person with FTD seems to lose motivation in things or appears bored or lonely. You can search for groups in your area on our dementia directory.

People caring for a person with FTD may find the following tips useful.

Try to accept changes in behaviour - if they are harmless

Many people with FTD have an active social life for some years after diagnosis. However, changes in their behaviour can make social situations more challenging, both for the person with dementia and those who care for them.

Carers may find it less stressful if they try to accept socially inappropriate behaviour as part of the condition rather than confront the person – as long as the behaviour cannot harm anyone.

While these situations may be awkward or embarrassing, it is important to remember that a person with FTD has little control over these actions.

They are also unlikely to understand the impact of their behaviour on others.

If a person with FTD regularly behaves inappropriately in public, their carer may find it useful to:

• try to remove any potential triggers for this behaviour – such as a noisy or crowded environment
• distract the person – such as asking them a question about a completely different topic n explain to other people that the person has dementia. 

Some people with dementia use helpcards that they can use to show they have difficulties and also advise how to help them when they’re out in the community. You can order these from Alzheimer's Society online or by calling 0300 303 5933.

It may also be easier for a carer to accept other changes in the person’s behaviour, if they are harmless. For example, if a person wants a fixed routine or to obsess over an activity (such as doing jigsaws or listening to music), it may be best to let them do so.

However, some behaviours, such as over-eating and drinking too much alcohol, can lead to greater problems. Be aware of how much alcohol the person is drinking. If they are over-eating, it can help to only offer food at mealtimes and in suitable portions, and to swap unhealthy food for healthier options. 

Try to understand why a person's behaviour has changed

Certain changes in behaviour, such as restlessness, agitation or aggression, may be a sign that the person is in distress. The reason for this could be:

• they are too hot or too cold
• they are in pain or have another medical condition, such as constipation or an infection
• their environment is too noisy, bright or cluttered
• they misunderstood something or someone – for example, interpreting a joke as being serious
• they cannot control their emotions
• the person is frustrated because their routine has changed or they are unable to communicate effectively
• the person lacks a sense of purpose and does not have enough to keep them active.

Understanding why a person’s behaviour has changed may help carers support them better.

Try non-drug treatments before drugs treatments

Physical exercise, music or other activities that the person enjoys or finds useful are also very helpful.

These activities are often the most effective way of helping a person with FTD to maintain a good quality of life. It is important to try this before considering any drug treatments, such as antipsychotics.

If drugs are being considered, the person with FTD should be referred to a specialist who can advise on the risks and benefits.

Remember carers need support too

Changes in behaviour can be very distressing for anyone caring for someone with FTD and it’s important that carers are supported as well.

Along with talking to their GP, it may be helpful to call Alzheimer’s Society support line on 0333 150 3456 or visit our online community, Dementia Support Forum.

A speech and language therapist with the right skills and experience can support someone with FTD who is losing their language or speaking abilities.

They can help the person get the most out of their existing skills and find new ways for them to communicate.  For example, a person may be taught non-verbal ways of communicating, such as using gestures, drawing or electronic devices.

A therapist can also help a person’s carer find new ways of listening and talking – for example, using simpler and shorter sentences.

If a person has problems swallowing, a speech and language therapist can also give advice on eating and drinking.

For more general information about communicating with people living with dementia see our pages on communicating and language.