Understanding frontotemporal dementia (FTD)
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Understanding frontotemporal dementia (FTD)
2 Dementia UK
Understanding for example not knowing what
frontotemporal dementia words mean
Frontotemporal dementia (FTD) - logopenic variant or logopenic
is an umbrella term for a group of aphasia (LPA) – this causes
dementias that mainly affect the difficulty finding words when
frontal and temporal lobes of the speaking, and muddling
brain, which are responsible for words, eg saying ‘aminal’
personality, behaviour, language rather than ‘animal’
and speech.
FTD is a rare form of dementia. It is
This group of dementias thought that only around one in 20
consists of: people with a dementia diagnosis
have FTD. However, it is the most
• behavioural variant
common type of dementia in
frontotemporal dementia
people aged 60 and under.
(bvFTD), also known as Pick’s
disease or frontal dementia – What causes
this mostly affects the frontal frontotemporal
lobe in the area regulating social dementia?
behaviour. This is the most
In FTD, there is an abnormal build-
common form of FTD
up of proteins within the brain,
• primary progressive aphasia which clump together and cause
(PPA). Variants include: damage to the cells. At present,
it is not known why this occurs.
- semantic variant or semantic
However, it is thought to have a
dementia (SD) – this affects
genetic link in about one third of
the temporal lobe in the area
people with the diagnosis. For
that supports understanding
bvFTD, it is likely that around 40%
of language
of people with the diagnosis have
- nonfluent variant or a form of ‘familial’ FTD due to a
progressive nonfluent aphasia genetic problem.
(PNFA) – this affects the
In common with other dementias,
person’s ability to use speech,
the onset of FTD tends to occur
Understanding frontotemporal dementia (FTD) 3
gradually and get worse over time. PPA usually have difficulty with
FTD tends to be diagnosed more language and communication.
commonly in 40- to 60-year-olds,
Symptoms of behavioural variant
but some people may be younger or
FTD (bvFTD)
older than this. It affects both men
• reduced motivation or lack of
and women equally.
interest in things the person
What are the symptoms used to enjoy, or in other people,
of frontotemporal including family members
dementia? • inappropriate behaviour,
The symptoms of FTD usually eg making insensitive or
develop gradually, and differ suggestive comments, staring
from the early memory and at strangers and being over-
concentration symptoms that familiar with them
are common in other forms of
• reduced empathy and ability to
dementia. In FTD, the changes are
understand what others may
mainly in personality, behaviour
be feeling
and problem-solving. People with
4 Dementia UK
• difficulty focusing on tasks and with less common words and
being easily distractible then more common words as
SD progresses
• obsessive or repetitive
behaviour, eg repeating • A person with SD is also likely to
phrases or gestures, hoarding, have a tendency to forget what
or excessive focus on common objects are and what
collecting things they do, eg kettle, toaster, keys
• changes in behaviour regarding As SD develops over time, the
food or drink, eg craving sweet changes are likely to become similar
foods, poor table manners, to those experienced in bvFTD.
overeating or drinking too
Symptoms of nonfluent variant
much alcohol
or progressive nonfluent
• difficulty with planning, aphasia (PNFA)
organising and decision-making, • This type of dementia affects
such as problems managing the person’s ability to use
finances and in the workplace speech, including forming
sentences and using
• loss of insight (lack of awareness
grammar correctly
of the changes in themselves)
• The person with PNFA may
Primary progressive aphasias
be less able to conduct a
(PPA) differ from bvFTD in
conversation due to these
the early stages as the issues
changes – for example, they may
experienced tend to involve
use shortened sentences, be
language rather than behaviour.
more hesitant in their speech or
Symptoms of semantic variant or use the wrong words to convey
semantic dementia (SD) their intentions
• The early signs include changes
Symptoms of logopenic variant
in the ability to remember, find
or logopenic aphasia (LPA)
or understand words
• This type of dementia affects
• There is a gradual loss of the person’s ability to find the
vocabulary over time, starting right words
Understanding frontotemporal dementia (FTD) 5
• The person with LPA may stop signs and mistaking these for other
speaking mid-sentence as they conditions such as depression,
try to find the right word to say. stress, relationship problems
This is usually more problematic and work-related issues. There is
when communication is about also a common misconception
something specific, or if they are that dementia only occurs in
searching for an unfamiliar word older people and usually involves
memory problems.
• Unlike in SD, people with early
LPA are unlikely to forget the It is important to get an accurate
meaning of words or what diagnosis of FTD so that advice,
common objects do support and services can be
arranged to help the person and
Getting a diagnosis of their family. However, this can be
frontotemporal dementia problematic if the person lacks
There are often significant delays awareness of the changes in their
in getting a diagnosis of FTD for a personality and behaviour and
combination of reasons, including therefore refuses to visit the GP.
a lack of awareness of the early6 Dementia UK
These are some suggestions for of dementia. You can do this by
addressing this reluctance to phone, letter or email.
seek advice.
While the GP will not be able to
• Speak to the person who has discuss their patient for reasons
symptoms of FTD and explain of confidentiality, they should
there are other potentially consider the information provided
treatable conditions that and decide whether to call the
could explain their difficulties, person in for a review or visit them
as listed above. Seeing a GP at home.
will help to identify these
The GP should conduct a range
issues so they can offer the
of blood tests and physical
most appropriate treatment
examinations to rule out any
• Ask someone who the potentially treatable conditions
person usually listens to and like physical or mental health
trusts to persuade them to issues. The GP may also conduct
visit the GP for a check-up. a brief cognitive assessment, but
This could be a friend, family as these are usually focused on
member or colleague testing memory and orientation,
the person may score highly, which
• Arrange for the person to be
could further delay a referral for a
called into the surgery for a
specialist assessment.
health check or screening tests –
see below If the person needs further tests,
they should be referred for an
Prior to booking an appointment,
assessment with a specialist in FTD.
it is useful to provide the GP with
A full history of their symptoms
brief details of your concerns,
should be gathered, including
explaining what the issues are,
details of changes in personality,
when they started, what happens,
behaviour, mood and everyday
how they affect the person’s life
living abilities.
and those around them, how
long this has been happening for, A comprehensive assessment
and if there is any family history focusing on attention, memory,Understanding frontotemporal dementia (FTD) 7
fluency, language, visuospatial Treating frontotemporal
abilities and behaviour changes dementia
should be conducted, including
Currently, there is no known
an MRI scan of the brain. It is
prevention or cure for FTD,
important that the family is also
although there is ongoing
involved in the assessment so they
research into its causes, potential
can share their experience of the
treatments and cures. However,
changes in their family member.
there are things that can help the
Where familial FTD is suspected, person and their family to live as
the specialist may refer the person well as possible after a diagnosis
for a blood test to identify any – see p8 for advice on preventing
genetic abnormality. It is important or managing some of the common
that counselling is given before the issues experienced in FTD.
blood test due to the implications
In some cases, medication
of identifying inherited FTD – for
may help to reduce some of the
example, there is a higher risk of
symptoms of FTD. Medication
the person’s children developing
should only be used after all other
the condition.8 Dementia UK
approaches have been tried due in public where there may be
to the possibility of adverse side misunderstandings or a need for
effects. Medications usually extra support. See p10 for a link
used for Alzheimer’s disease to our printable ID cards
(donepezil, rivastigmine and
• The Hidden Disabilities
galantamine) are not suitable in
Sunflower Scheme provides a
FTD and may actually increase any
range of cards, lanyards and
behavioural issues.
other information that may be
Practical tips helpful to give a visual cue to
for managing members of the public, retail
frontotemporal dementia staff and service providers such
as public transport that the
The changes in personality,
person has a hidden disability.
behaviour and communication
See p10 for details
that typically occur in FTD can be
challenging for the person with • Peer and social support groups
the diagnosis and their family. It is can provide an opportunity
important to recognise that these for people with FTD to share
changes are due to the effects experiences and tips for
of FTD on the brain and are not preventing or managing
intentional. Responding to these potential difficulties. These
behaviours in a calm, patient and may take place locally or
empathetic manner can reduce nationally, and may be held
distress for the person with FTD face-to-face or online
and the people around them.
• Noisy or crowded places can
These tips may help to prevent and be distressing for people
manage the effects of FTD. living with FTD and can trigger
changes in behaviour, so it may
• It is a good idea for the person
help to avoid these situations or
with FTD to carry a card with
provide support if they cannot
details of their diagnosis and
be avoided
what sort of help they may need.
This can be useful in situations • Having a routine and regularUnderstanding frontotemporal dementia (FTD) 9
• Overeating and craving sweet
foods are common in FTD. To
prevent an increase in weight
and related health problems,
offer food at set mealtimes, try
to control portion size, and buy
and offer healthier options
• As the person with FTD may
not be aware of the changes
in their behaviour and
personality, trying to correct
them could lead to arguments
and distress. Remember that
they are not deliberately
causing upset or offence – it
is the result of changes to the
activities can help the person to way their brain functions
feel more relaxed
People with PPA can find it very
• Look out for triggers such as difficult to communicate due to the
being too hot or cold, noise, pain, physical changes in their brain. As
misunderstanding, difficulty well as the tips above, the following
with emotional control, changes may be useful:
in routine, lack of activity or too
• Ask the person’s GP or specialist
much or too little stimulation
for a referral to a speech
• Focus on what the person can and language therapist for
still do rather than on what they assessment, advice and support
can’t. Encourage them to keep
• Communication aids may be
up with activities they enjoy,
helpful, such as electronic
eg photography, art, exercise,
devices and non-verbal
swimming, walking or taking care
approaches like gestures, writing
of a pet
or drawing10 Dementia UK Sources of support FTD is a complex dementia due to the age of onset and the changes in personality, behaviour, language and speech. It can have a negative impact on many areas of life, including work, finances, socialising, and relationships with friends and family. This is often complicated by delays – sometimes of several years – in getting an accurate diagnosis. It is important that the person with FTD and their family receive specialist advice and support. Our dementia specialist Admiral Nurses work throughout the UK and in many areas, can offer support in person. The person’s GP or dementia specialist may also be able to tell you about other groups and services that can help. Our free Dementia Helpline provides information, advice and support with any aspect of dementia. To speak to a specialist nurse, call 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. You may find the following sources of support helpful: Dementia UK leaflets Getting a diagnosis dementiauk.org/getting-a-diagnosis About young onset dementia dementiauk.org/about-dementia/young-onset-dementia How to handle communication challenges dementiauk.org/communication-challenges Hidden Disabilities Sunflower Scheme hiddendisabilitiesstore.com Young onset dementia ID cards youngdementianetwork.org/resources/young-onset-id
Understanding frontotemporal dementia (FTD) 11 For further information about support groups visit: Dementia UK – Find support Young onset dementia groups and services database dementiauk.org/about-dementia/young-onset-dementia/ find-support Dementia Carers Count Free support courses for family and friends caring for someone with dementia, including young onset dementia dementiacarers.org.uk Dementia Engagement and Empowerment Project (DEEP) A network of around 80 groups of people living with dementia dementiavoices.org.uk/deep-groups find-a-deep-group-in-your-region Rare Dementia Support Specialist support around rare dementias through group meetings, newsletters and direct support by email and telephone raredementiasupport.org tide: together in dementia everyday A number of online groups including a young onset dementia carers group which meets monthly tide.uk.net Young Dementia Network A collaboration between people affected by and working in the field of young onset dementia to improve the lives of people with the diagnosis youngdementianetwork.org Personal checklist A place to record possible dementia symptoms youngdementianetwork.org/resources/personal-checklist
The information in this We receive no government
booklet is written and funding and rely on voluntary
reviewed by dementia donations, including gifts
specialist Admiral Nurses. in Wills.
We are always looking For more information
to improve our resources on how to support
to provide the most relevant Dementia UK, please visit
support for families living dementiauk.org/donate
with dementia. If you have or call 0300 365 5500.
feedback about any of our Publication date: March 2022
leaflets, please email Review date: March 2024
feedback@dementiauk.org © Dementia UK 2022
If you’re caring for someone with dementia or if you have
any other concerns or questions, call or email our
Admiral Nurses for specialist support and advice.
Call 0800 888 6678 or email helpline@dementiauk.org
Open Monday-Friday, 9am-9pm
Saturday and Sunday, 9am-5pm
dementiauk.org • info@dementiauk.org
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