Frontotemporal dementia

6. Treatment and support

Researchers are working to find effective new treatments for FTD, but there is currently no cure and the progression of the disease cannot be slowed. Treatment tends to focus on helping the person live well by easing their symptoms and supporting them and those around them.

Supporting a person with FTD usually requires input from a team of professionals. These can include a GP, community nurse, psychiatrist and speech and language therapist. When someone has problems with movement or co-ordination, support from a neurologist, physiotherapist or occupational therapist is often needed as well.

Caring for someone with FTD can be particularly challenging, because of the person’s age and the changes in behaviour and communication.

Specialist support groups for younger people with dementia or those with FTD, as well as their carers, can provide invaluable practical and emotional support (see ‘Other useful organisations’ for details, including specific support groups for people affected by genetic FTD). Social interaction can also help if the person seems to lose motivation in things or appears bored or lonely.

If a person is found to have a gene mutation that causes FTD, birth relatives will also have to decide whether to have genetic counselling and testing themselves. Testing unaffected family members can be a cause of great anxiety. The result can have emotional, psychological, social, practical and occupational implications. This is why testing would only be done after extensive counselling with a geneticist.

Behavioural changes

Many people with FTD continue to lead an active social life for some years following diagnosis, but changes in their behaviour can begin to make social situations more challenging. It can be less stressful for carers if they try to accept awkward and potentially embarrassing behavioural symptoms as part of the disease, rather than confront or correct the person, unless the behaviour poses a risk of harm.

The person with dementia will generally lack insight into their condition or the impact of their behaviour on others. They will also generally not have much control over their actions. When a person with FTD behaves inappropriately in public, it can be useful for the carer to try to remove any triggers for this behaviour, or distract the person with something else.

Some carers of people with dementia carry a small card that explains to members of the public that the person has dementia. Alzheimer’s Society produces helpcards than you can use for this purpose.

Problems with lack of insight and impulsive behaviour make safe driving very difficult for someone with FTD. Driving is often a very sensitive issue that needs careful handling. For more on this see driving.

It may be easier for a carer to allow the person to carry on with other behaviours, as long as they are harmless. The person may prefer to follow a fixed routine or pursue an obsession (eg with jigsaws or music), and it may be best to let them. However, some of these behaviours, such as compulsive eating and drinking, won’t be harmless. Many carers try to help minimise a person’s opportunity for compulsive eating – for example, by offering food only at mealtimes and in suitable portions or healthier (eg low-fat) options. The person’s use of alcohol may also need to be closely monitored.

It is important to try to manage restlessness, agitation or aggressive behaviour without drugs initially, where possible. This behaviour might result from a person trying to communicate an unmet need, such as feeling frustrated or in pain. Physical exercise and enjoyable, tailored activities, carried out as part of a routine, can help to reduce these types of behaviour.

There is evidence that certain antidepressant drugs can help some people with FTD feel less apathetic (having little interest in people and things) and relieve some behavioural symptoms.

If antipsychotic drugs are being considered for a person with FTD, it is recommended that a specialist advises on the risks and benefits.

There have been a few small trials of drugs used to treat Alzheimer’s disease (donepezil, rivastigmine, galantamine and memantine) in people with FTD. These have had mixed results. In some cases, these drugs made people’s symptoms worse. They are also not licensed for use in FTD and are not widely prescribed.

Language problems

A speech and language therapist with the right experience will be able to support someone with FTD who is gradually losing their language skills. They will try to maximise a person’s existing skills and find new ways for them to communicate.

A therapist can advise a person’s carer on new ways of listening and talking – for example, talking in simpler sentences. In time, a person who is losing their language skills may be taught non-verbal ways of communicating. These can include the use of gestures, drawing or electronic devices.

A speech and language therapist can also help if a person has problems swallowing and can offer practical advice on eating and drinking.