Frontotemporal dementia (FTD) is a group of dementias which mainly affects personality and behaviour or language and speech, depending on which areas of the brain are affected.
If you or somebody you know has received a diagnosis of FTD, or are interested in learning more about FTD, then RDS can provide you with information and advice
Understanding FTD
Frontotemporal dementia (FTD) is a group of dementias which mainly affects personality and behaviour or language and speech, depending on which areas of the brain are affected.
FTD is subdivided into two types:
- Behavioural variant FTD (bvFTD), which mainly affects behaviour and personality
- Primary progressive aphasia (PPA), a group of dementias mainly causing a loss of speech and language abilities. These include non fluent variant PPA (nfvPPA), and semantic variant PPA (svPPA).
FTD can affect both men and women and usually starts when people are in their 40s, 50s or 60s. However it can also affect older people and sometimes even younger people.
The following information will mainly focus on behavioural variant FTD. For more detailed information on the forms of FTD that affect language please visit our Understanding PPA page.
Causes of FTD
FTD is caused by the loss of brain cells in the front of the brain, but the processes that lead to the loss of these brain cells are varied and not well understood.
What we do know is that FTD is caused by an abnormal build-up of certain proteins in the brain cells, but we do not yet know why or how this happens.
In around 30-40% of cases a person with FTD may have a family history of the condition in which a parent or sibling has been affected. In these cases the cause of FTD is likely to be genetic. However, it is important to note that most cases of FTD do not have a genetic basis. Visit the familial frontotemporal dementia (fFTD) group page for information and support for families affected by this genetic form of FTD.
In a small number of people, FTD can overlap with one of a number of diseases that affect movement of the body such as motor neurone disease (MND), progressive supranuclear palsy (PSP), and corticobasal syndrome (CBS). The symptoms of these diseases can occur alongside those of FTD.
Diagnosis and testing
As FTD is rare, many people describe long and frustrating journeys through different medical professionals before receiving a diagnosis. See the RDS website page on getting or refining a diagnosis for further information.
By increasing awareness and understanding of FTD, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis of FTD. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.
Behavioural variant FTD (bvFTD)
When diagnosing bvFTD, a doctor will assess behaviour and cognitive functions (aspects of thinking) before, in some cases, a more detailed assessment. Brain scans can show the loss of brain cells caused by FTD, but there is no single test that can diagnose FTD with complete reliability.
In some people FTD can be confused with other conditions in which there are problems with behaviour (for example, some psychiatric disorders) and with other dementias. A doctor will often arrange blood tests, a lumbar puncture and an MRI to help confirm the diagnosis and to rule out other conditions.
Semantic variant PPA (svPPA) and non-fluent variant PPA (nfvPPA)
There are no single-tests available for svPPA and nfvPPA. Diagnosis is usually made using a combination of clinical assessment, psychological testing and a brain scan. For more information on diagnosing and testing for svPPA and nfvPPA, please visit our Understanding PPA page.
It is important that healthcare professionals are better informed about FTD and equipped to recognise the symptoms. Rare Dementia Support is working to improve awareness of FTD and other rare dementias and to train healthcare professionals. For more information and resources visit our Learning page.
By increasing awareness and understanding of FTD, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.
I have been diagnosed with FTD – what next?
When given a diagnosis of FTD, people often ask what will happen next. What challenges might they face and when? What support might be available?
While we try our best to provide general guidance on how abilities may change during the course of FTD, it is important to bear in mind that not everyone will experience the same symptoms or progress at the same rate. The experience of FTD will vary according to factors including age, general health and the specific type of FTD.
See the RDS website page on support after a diagnosis for further information. The information here focuses on what to expect if you have received a diagnosis of behavioural variant frontotemporal dementia (bvFTD), which mainly affects personality and behaviour.
You may have reached this page because you are affected by a diagnosis of primary progressive aphasia (PPA) or, more specifically, a diagnosis of either semantic variant PPA or progressive non-fluent PPA. These dementias affect speech and language and are also forms of frontotemporal dementia (FTD).
If you need information and advice specifically related to these language forms of FTD, please visit our PPA page . More information on the different forms of FTD can also be found on the FTD Talk website.
Below we have outlined some of the early symptoms commonly associated with bvFTD. For more information about symptoms associated with FTD generally and for support and adaptation strategies, please visit the managing and adapting page
Symptoms of bvFTD
The first symptom of bvFTD is usually a change in personality or behaviour which is out of character for the person affected. There are relatively few memory problems in the early stages of the condition. These symptoms may come on very slowly and not be noticed at first. These may include:
- uncharacteristic behaviour resulting from a loss of inhibitions or increased extroversion (such as talking to strangers, making inappropriate remarks in public)
- reduced interest and withdrawal from social activities
- a loss of empathy (for example being rude, impatient or aggressive)
- changes in sexual behaviour (such as either more/less or inappropriate interest)
- being more easily distracted
- developing fixed routines or becoming obsessive about things and objects (for example ‘clock watching’ or hoarding objects)
- changes in food preferences (such as developing a sweet tooth, craving unusual foods)
- changes in appetite (such as overeating or drinking excessive amounts of alcohol)
- decreased amount of speech or repeating oneself
- a lack of insight (including being unaware of the true extent of the problems)
In the early stages of bvFTD people may find that their memory remains intact. However, people might have difficulties with organisation and concentration which can feel as though they are experiencing memory problems. Therefore, a problem with memory is often a symptom described by people living with bvFTD.
People with bvFTD may find that behavioural and personality problems progress over time. Other aspects of their thinking may also become affected such as: finding the right word, understanding speech, and memory. However some behaviours such as disinhibition may become less of a problem. The speed of these changes can differ significantly between people.
As the disease progresses, people will need help with most aspects of daily life. Continence may become a problem and eventually nursing care may become necessary.
In the later stages of bvFTD people may experience issues around eating and swallowing, for example compulsively putting objects in their mouths. Difficulties with swallowing can have serious consequences: people may be at risk of losing weight, of chest infections and pneumonia or of choking on food.
Common problems around eating and swallowing that you may notice:
- being unaware of food when it arrives
- failing to do anything with food in the mouth, just holding it there
- difficulty chewing and difficulty moving food to the back of the mouth
- spitting lumps of food out
- eating very fast or putting too much into the mouth
- eating insufficient amounts or refusing food and drink
- talking with food or drink in the mouth and forgetting to swallow causing coughing
- coughing or choking on food and liquids
- complaints of food not going down or getting stuck in their throat
- a ‘wet’ or ‘gurgly’ voice after swallowing
- difficulty swallowing tablets
- dribbling
- chronic chestiness or recurring chest infections
A speech and language therapist can assess the difficulties and may be able to make specific suggestions about what will help so. Request a referral via a Consultant, GP or other medical professional.
In general, the onset of other neurological problems – such as difficulties with movement or swallowing – tends to bring reduced independence and a need for increased support.
People affected by bvFTD, particularly carers, may find coming along to our FTD Support Group meetings helpful.
Living with bvFTD
Support
Receiving a diagnosis of FTD can be isolating and can have an impact on not only the person living with the diagnosis, but also family members, friends and carers. It is really important that the right support is available, not only for the person with FTD, but also for the people who care about and support them. The RDS support group meetings can be a good place to start.
Support groups are a great way of accessing help, information, advice and support in a space of mutual respect and understanding. They provide opportunities to speak to professionals and ask questions, as well as for connecting with others in similar situations.
People living with FTD and their friends and family are welcome to join our London support group meetings, our small group meetings or to see what Regional Network Hubs might be available.
Because FTD is rare, many healthcare services may not have much experience in supporting people affected by it. However, you may still find it helpful to seek support from a variety of health and social care professionals such as GPs and nurses, community mental health teams and social workers. See the RDS website page on professionals for more information about what types of allied health professional support is available.
It may be hard for people with FTD to receive the correct diagnosis. This can be frustrating and distressing. By increasing awareness and understanding of FTD, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis of FTD. Help us by sharing your stories and contacting us at contact@raredementiasupport.org
If someone has received a diagnosis of FTD, they may have problems with movement or coordination. In these cases, support from a neurologist, physiotherapist or occupational therapist can also be accessed.
It is important to note that, as FTD is a rare dementia, many healthcare services do not have much experience supporting people with FTD. However, it can still be helpful to seek support from a variety of health and social care professionals such as GPs and nurses, community mental health teams and social workers.
Sign up to become a member of RDS to receive support from our team, and visit out Support at different stages page.
Research
Some RDS members living with FTD find that contributing to research is a beneficial way of making a difference, if not for themselves, then for others who will receive this diagnosis in the future. Read about our research opportunities.
Strategies for managing and adapting to bvFTD
There are a variety of strategies that people have found useful to help them adapt to and manage the symptoms of bvFTD. Everyone’s experience of bvFTD is unique to them, and what works for some may not work for others. Please visit the symptoms and managing and adapting pages of our website for more helpful advice.
Treatment
Unfortunately, there are currently no medications available to treat bvFTD or to slow its progression. Treatment therefore focuses on helping people to manage their symptoms and on supporting them and those around them. There are multiple different avenues being investigated, including gene therapies and drugs to try to decrease the amount of abnormal protein in the brain. Many of these will be coming to trials in the next couple of years. FTD Talk has more information about this.
However, there are certain cases where people living with bvFTD might find medical treatments helpful. Medication for behavioural symptoms and mood changes may become useful as the disease progresses. There is some evidence that selective serotonin reuptake inhibitors (SSRIs) may help improve behavioural symptoms. For example drugs such as sertraline or citalopram.
Neuroleptic drugs have been used to treat behavioural symptoms but are associated with a significant risk of side-effects including the development of parkinsonism and deterioration in thinking.
In a small number of people, FTD can overlap with one of a number of diseases that affect movement of the body such as motor neurone disease (MND), progressive supranuclear palsy (PSP), and corticobasal syndrome (CBS). In these cases, treatments specific to these conditions may be prescribed.
Understandably, people living with any form of FTD can become depressed or anxious. These are treatable problems, so it is important that they are detected and managed effectively, including referral to a mental health professional where needed.
Please note that you should always speak to your GP or healthcare professional before taking any medical treatment. You may also find the RDS website page on adapting emotionally helpful. You can also visit our Drug treatments page to find out more.
Talking about your diagnosis
Knowing when and how to tell family, friends and colleagues about a diagnosis of FTD can be difficult. It can take time for people to understand and come to terms with a condition they have never heard of before. There is no right or wrong time to tell those around you, and you will know best when feels right for you.
Many members find it helpful to share their story with other people living with the same diagnosis, and there are a range of opportunities for this at the small and large group meetings we offer.
Finding the right language is also important when telling those close to you. We have made a short film, featuring the experience of someone affected by FTD (specifically the behavioural variant) as well as clinical explanations and insights. Watch the film here. Find out more information about ways to approach talking about a diagnosis.
Latest FTD seminar
You can view the latest FTD seminar, which features a full recording of the meeting, including research updates, clinical presentations, member stories, and a Q&A session.
