Frontotemporal dementia (FTD) is an umbrella term for a group of dementias that mainly affect the frontal and temporal lobes of the brain, which are responsible for personality, behaviour, language and speech.
Unlike other types of dementia, memory loss and concentration problems are less common in the early stages.
FTD is a rare form of dementia affecting around one in 20 people with a dementia diagnosis.
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.
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.
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 firstname.lastname@example.org.