Understanding frontotemporal dementia

In FTD, there is an abnormal build-up of proteins within the brain, which damages the cells.  

It is not known why this occurs, but it is thought to have a genetic link in about one third of people with the diagnosis.  

FTD is most common in people aged 40 to 60 but can also affect younger or older people. 

There are two types of FTD – behavioural variant FTD (bvFTD) and primary progressive aphasia (PPA). 

• reduced motivation  
• lack of interest in things the person used to enjoy 
• inappropriate behaviour, eg making suggestive comments, staring, being over-familiar with people   
• reduced empathy  
• difficulty focusing on tasks  
• obsessive or repetitive behaviour, eg repeating phrases or gestures, hoarding  
• changes in behaviour regarding food or drink, eg craving sweet foods, poor table manners, overeating, drinking too much alcohol  
• difficulty with planning, organising and decision-making  
• lack of awareness of the changes in themselves (lack of insight)  

There are three types of PPA, which all tend to affect language rather than behaviour.   

Semantic variant or semantic dementia (SD)  

• difficulty remembering, finding or understanding words  
• gradual loss of vocabulary  
• forgetting what common objects are and what they do, eg kettle, toaster, keys 
• as SD progresses, the changes are likely to become similar to those experienced in bvFTD 

Nonfluent variant or progressive nonfluent aphasia (PNFA)   

• difficulty using speech, including forming sentences and using grammar correctly  
• difficulty conducting conversations – eg hesitation, using shortened sentences or using the wrong words  

Logopenic variant or logopenic aphasia (LPA)   

• difficulty finding words  
• stopping speaking mid-sentence as they search for the right word  
• unlike in SD, people with early LPA are unlikely to forget the meaning of words or what common objects do   

Getting a diagnosis of FTD can be difficult for reasons including:  

• lack of awareness of the early signs  
• mistaking signs for other conditions such as depression, work stress and relationship problems 
• the misconception that dementia only occurs in older people and usually involves memory problems 
• the person’s reluctance to seek medical advice – this may be because they lack awareness of the changes in themselves, or are afraid of a dementia diagnosis

However, if you are concerned that someone may have FTD, it is important to encourage them to see their GP.  

If they are reluctant, you could contact the GP by phone, email or letter and outline your concerns – while the GP will not be able to breach the person’s confidentiality, they should consider the information and decide whether to call them in for an appointment or arrange a home visit.

See Sources of support, below, for our information on getting a diagnosis, which includes dealing with reluctance to see a GP. 

If possible, go to the appointment with the person so you can share your views and concerns.   

The GP should:  

• take a full history including: 
  • the person’s symptoms  
  • when they started 
  • how they affect the person’s life 
  • any family history of dementia 
• perform/arrange blood and urine tests and physical examinations to rule out other physical or mental health issues 
• conduct a brief assessment of their memory and cognitive skills – but this may be unreliable for people with FTD as memory problems are less common than in some other types of dementia

If the person needs further investigations, they should be referred to a specialist in FTD for a comprehensive assessment of attention, memory, fluency, language, visuospatial abilities and behaviour changes. 

They may also have an MRI scan of the brain.  

Currently, there is no known prevention or cure for FTD. In some cases, medication may be prescribed, but this is not always suitable.   

It is often best to focus on practical strategies to help the person live as well as possible with the diagnosis.  

For example:  

• encourage the person to carry a form of identity with details of their diagnosis – this can help in public situations where there may be misunderstandings or a need for extra support. The Hidden Disabilities Sunflower Scheme provides a range of cards and lanyards – see Sources of support, below 
• look for support groups in person or online where people with FTD can share experiences and advice 
• follow a daily routine to help the person feel more relaxed 
• try to avoid triggers like noisy or crowded places; changes in routine; pain; misunderstanding; boredom; physical inactivity 
• encourage the person to continue activities and hobbies they enjoy 
• if the person overeats or craves sweet foods, offer food at set times, try to control portion size, and provide healthier options   
• remember that the person is not intentionally causing upset or offence. Rather than challenging or correcting them, try to stay patient, calm and empathetic to reduce distress 

If the person has communication difficulties:  

• ask their GP or specialist for a referral to a speech and language therapist for assessment, advice and support   
• try using communication aids like electronic devices, gestures, writing or drawing  

To speak to a dementia specialist Admiral Nurse about FTD or any other aspect of dementia, please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org.   

You can also book a phone or video appointment in our virtual clinics: visit dementiauk.org/get-support/closer-to-home.  

Dementia UK information:  

Primary progressive aphasia (PPA) 

Progressive supranuclear palsy (PSP)

Corticobasal degeneration (CBD)

Getting a diagnosis of dementia 

Young onset dementia section 

How to handle communication challenges  

Coping with distress 

Eating and drinking for a person with dementia 

Young onset dementia groups and services finder 

Other resources: 

Dementia Carers Count 
Free support courses for family and friends with caring responsibilities   

Dementia Engagement and Empowerment Project (DEEP) 
A network of around groups of people living with dementia   

Rare Dementia Support  
Specialist support around rare dementias 

tide: together in dementia everyday 
Online support groups, including a young onset dementia carers group 

Hidden Disabilities Sunflower Scheme 
Resources for people with hidden disabilities, including lanyards and ID cards  

Young Dementia Network

A network of people with young onset dementia, family and friends, and professionals

Young onset dementia ID cards