Treatment and support for frontotemporal dementia

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

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

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

Support groups offer useful advice and emotional support to people living with FTD and those who care for them. This can include support for families concerned about genetic causes of the condition. Visit Rare Dementia Support for more information. 

It can be hard to find support groups in some areas. This is especially true for people with young-onset dementia. To search for general dementia support groups and services in your local area, visit our dementia directory. 

Dementia Support Line is our personalised service for anyone affected by dementia. To speak to one of our dementia advisers, call 0333 150 3456.

To talk with others affected by dementia, visit our online community in the Dementia Support Forum. 

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. 

It is common to feel awkward or embarrassed in these situations. However, 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
• 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. These can be ordered 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, keep to regular portions, and limit access to unhealthy snacks, if these are being eaten excessively. 

Changes in mood and behaviour can sometimes be helped with medicines, such as those often prescribed for people with anxiety or depression. The most common medications used are citalopram and escitalopram.

Antipsychotics are sometimes used for severe symptoms that put the person or others at risk of harm. These include hallucinations, delusions, or aggressive behaviour. However, they should only be used when all other solutions have been tried, and at the smallest possible dose for the shortest amount of time. This is because there is little evidence that they work for people with FTD and they may have potentially dangerous side effects. 

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. 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 treatments with medicines.

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 our Dementia Support Line on 0333 150 3456 or visit our online community, Dementia Support Forum. 

Speech and language therapy can make a big difference for someone with a language-led dementia. It uses a range of therapeutic strategies, coaching and lots of practice to keep a person communicating effectively for longer. 

For example, a therapist may focus on the most important words the person needs for everyday use and find ways to make them easier to use.

Speech and language therapy can also help a person’s partner or carer to find more effective ways of listening and speaking. For example, this may be using simpler and shorter sentences. 

If a person has problems swallowing, the therapist can also give advice on how to eat and drink more safely.

As the disease progresses, the therapist can help the person to keep communicating effectively without needing to use speech or words. They can learn to use gestures, drawing or other communication aids that enable them to express their wishes and preferences. This can also help to maintain a vital connection with friends and family.

It’s important to try to access speech and language therapy as soon as possible rather than waiting for a crisis, such as the loss of an essential communication skill. This is because the therapy is designed to help a person to hold on to skills for as long as possible, rather than regaining them once they’ve been lost.

Accessing speech and language therapy through the NHS is not always easy and straightforward. However, it should be possible for anyone with a language-led dementia to request a referral by their GP or neurologist to a speech and language therapist, who can help with communication skills. 

It may also be an option for some people to find a therapist who works privately. The Association of Speech and Language Therapists is a contact point for members of the public seaching for a private speech and language therapist.