Frontotemporal dementia assessment
An assessment to find out whether changes in personality, behaviour or language are caused by frontotemporal dementia, a less common type that often affects younger people.
✓ Medically reviewed by a GMC-registered consultant · last reviewed September 2026 · next review September 2027 · how we review
In short
- Frontotemporal dementia usually starts with changes in personality, behaviour or language rather than memory loss.
- It often affects younger people (frequently under 65), which can delay diagnosis and has a big impact on families.
- There is no cure, and Alzheimer's medicines are generally not recommended and can sometimes worsen behaviour.
- Diagnosis leans heavily on a detailed history from someone close, plus specialist tests and a brain scan, as standard memory tests can look near-normal early on.
A plain-English summary. The detail — including risks and recovery — is below.
At a glance
A general guide. Your psychiatrist will give you advice for your situation.
Clarifies whether FTD is behind changes in behaviour, personality or language
Behaviour that puts the person or others at immediate risk — this needs an urgent response, not a routine clinic wait.
You may feel tired or unsettled after testing. A first impression may be shared, but with FTD a clear, settled answer often takes longer and may need a...
A clear, compassionate explanation of a diagnosis that often hits younger people and families hard.
You may feel tired or unsettled after testing. A first impression may be shared, but with FTD a clear, settled...
Results are reviewed together and a diagnosis is usually given, with a letter to your GP and a plan focused on...
Specialist and younger-onset services, speech and language support for the language forms, and family support are...
The team and family focus on managing symptoms and on practical matters such as work, finances and safety...
What is a frontotemporal dementia assessment?
Frontotemporal dementia (FTD) is a less common type of dementia caused by damage to the front and sides of the brain — the frontal and temporal lobes. Unlike Alzheimer's disease, it often does not start with memory loss. Instead, the first changes are usually in personality and behaviour, or in language.
FTD often affects younger people, frequently those under 65, which can make it especially hard for families and can delay diagnosis. There are different forms: a behavioural variant, where personality, behaviour and judgement change; and language forms (primary progressive aphasia), where finding words, understanding their meaning, or speaking fluently become difficult.
Assessment means finding out whether FTD is behind these changes. Because memory may be relatively well preserved early on, the standard memory tests can look near-normal, so the assessment relies heavily on a detailed history — especially from someone close — together with specialist tests and a brain scan. It is often carried out by, or with, a neurologist or a specialist service as well as old age psychiatry.
There is no cure for FTD, and the medicines used in Alzheimer's disease are generally not recommended and can sometimes make behaviour worse. Treatment focuses on managing symptoms, supporting the person and family, and planning ahead.
Types, options & approaches
There may be different ways to do this. The right approach depends on the clinical question and your circumstances.
Options at a glance
These are the main approaches described in this guide. The right option depends on the diagnosis, your goals and what your clinician thinks is safe.
History and collateral history
The most important part. Because the person may not notice the changes, an account from a relative or close friend about personality, behaviour, judgement and language is...
Behavioural variant assessment
Looks at changes such as loss of empathy, loss of social awareness, impulsive or repetitive behaviour, changes in eating, and apathy, while everyday memory may be relatively...
Language assessment
For the language forms (primary progressive aphasia), assesses difficulty finding words, loss of the meaning of words, or slow, effortful speech. Specialist speech and...
Brain scan
An MRI or CT scan may show shrinkage focused on the frontal and temporal lobes. Specialist scans (such as a PET or SPECT scan) are sometimes used when the diagnosis is...
Preparing for your test
- Bring someone who knows you well; their account of changes in behaviour, personality or language is the single most useful part.
- Note when the changes started, with specific everyday examples, including anything out of character.
- Mention any family history of dementia at a younger age, as some forms can run in families.
- Bring a full list of your medicines, including anything bought without a prescription.
- Bring glasses and hearing aids and use them during testing.
- Write down your questions and any medical words used, so you can look them up later.
- If a scan is planned, mention any pacemaker, metal implants, or difficulty with enclosed spaces.
What happens
At the assessment, the clinician spends time talking with you and, very importantly, with the person who came with you, about changes in behaviour, personality, judgement, eating, motivation and language. Because the person affected may not recognise the changes, this account is central.
You will do tests of thinking, including ones that look at planning, judgement, social understanding and language, as standard memory tests can look near-normal in FTD. Most people have blood tests and a brain scan, often an MRI, which may show shrinkage focused on the frontal and temporal lobes.
Because FTD often affects younger people and can be mistaken for a mental-health condition, the assessment is careful and may involve a neurologist or a specialist service. Specialist scans or genetic discussion may be suggested in some cases. A clear answer can take time.
If FTD is diagnosed, the team explains what this means and focuses on managing symptoms — for example using approaches and, where helpful, medicines for specific behaviours — while being clear that Alzheimer's medicines are generally not recommended. Support for the person and family, and planning ahead, are central.
Is this test right for me?
A good consultation should explore whether it's the right choice for you now — including reasons to wait or consider something else.
May not be suitable if…
- Behaviour that puts the person or others at immediate risk — this needs an urgent response, not a routine clinic wait.
- Sudden confusion over hours or days — this points to delirium from illness and needs urgent medical assessment.
- Where a treatable psychiatric illness or another reversible cause is the likely explanation and should be addressed first.
- A memory clinic alone may not be the right setting; neurology or a specialist FTD service is often needed.
Delay or rearrange if…
- There is a current infection, delirium or other acute illness affecting behaviour or thinking.
- The person or family is in crisis and needs support before a full assessment.
- Key information is missing — without a collateral history, FTD is very hard to assess.
- An untreated mental-health condition may be contributing and needs addressing first.
- Specialist or neurology input is needed but not yet arranged.
Alternatives to discuss
- Referral to neurology or a specialist FTD or younger-onset dementia service.
- A mental-health assessment to rule out a treatable psychiatric cause.
- Speech and language assessment where the main problem is language.
- Genetic counselling where there is a family history of younger-onset dementia.
- The NHS specialist pathway rather than private assessment if speed is not the main concern.
Before you decide
Use this as a shared-decision checklist. The aim is not just “can this be done?”, but whether it is right for you, now, with the risks and alternatives clearly understood.
What matters most to me?
Think about symptoms, daily life, work, caring responsibilities, sport, fertility, travel, appearance and anxiety — the right choice depends on your priorities, not just the medical facts.
What are all my options?
Ask about waiting, monitoring, medicines, rehabilitation, a smaller or larger procedure, a different test, NHS referral, or a second opinion where that would help.
What would make me pause?
Active infection, pregnancy, unstable medical problems, smoking, medicines that increase bleeding, poor support at home, or feeling pressured are all reasons to slow down and get tailored advice.
What happens if I do nothing today?
For some problems, waiting is safe; for others, delay can make treatment harder. A good consultation should explain the trade-off in plain English.
Benefits
- Clarifies whether FTD is behind changes in behaviour, personality or language
- Helps avoid mislabelling the condition as a purely psychiatric problem
- Guides treatment towards what actually helps, and away from medicines that may not suit FTD
- Opens access to specialist support for the person and family, including younger-onset services
- Allows planning for work, finances and the future while the person can take part
- Helps families understand distressing changes that can otherwise be very confusing
Risks & complications
- Finding the assessment tiring or upsetting
- Worry and distress for the family, especially with younger-onset illness
- A diagnosis that has come after a long period of uncertainty or being misunderstood
- Standard memory tests looking near-normal, which can delay recognition
- An unclear diagnosis at first, needing specialist scans or a later review
- FTD initially mistaken for depression, another mental-health condition or a relationship problem
- Effects on work, driving, finances and insurance that need to be thought through
- Difficult conversations about genetic risk where a form runs in the family
- A wrong or incomplete first diagnosis that is later revised
- Behaviour worsening if a medicine that does not suit FTD is used
A particular risk with FTD is delay or mislabelling: because memory may be preserved early and behaviour changes can look like a mental-health problem, the right diagnosis can take time. Ask whether a specialist or neurologist has been involved, and be aware that the medicines used in Alzheimer's disease are generally not recommended for FTD and can sometimes make behaviour worse.
Published figures to discuss
The assessment is not a procedure with complication rates. Its main uncertainties are diagnostic: FTD can be mistaken for a psychiatric illness, standard memory tests can look near-normal early on, and diagnosis often needs specialist input over time. We have not quoted percentages, as robust, source-defensible rates relevant to an individual's assessment are not meaningful to state.
| Figure | Reported range | How to interpret it | Source / confidence |
|---|---|---|---|
| Misdiagnosed as depression, midlife crisis or personality problem | Common diagnostic delay | Behavioural change, disinhibition, apathy or language change may precede obvious memory problems. | Guide sourcesClinical context |
| Family/genetic implications missed | Important in some cases | A family history of early dementia or motor neurone disease may need genetics discussion. | Guide sourcesClinical context |
| Capacity and financial risk | Common practical issue | Impulsivity, poor judgement and scams/spending can require early legal and safeguarding planning. | NHS — Frontotemporal dementianhs.ukSource-linked context |
| Wrong dementia medication expectations | Common consent issue | Alzheimer's medicines are not usually helpful for FTD and can sometimes worsen symptoms. | Guide sourcesClinical context |
These are literature figures, not a personalised prediction. Your own risks and likely benefits depend on your circumstances, your health, and how your care is carried out and followed up.
What happens afterwards
There is no physical recovery from the assessment. What matters afterwards is understanding a diagnosis that often affects younger people and families hard, getting specialist support, and planning ahead.
- Feeling drained after an assessment that covers difficult changes
- Needing time, and more than one conversation, to take in the diagnosis
- Strong emotions in the family, especially where the person is younger
- A diagnosis that becomes clearer with specialist input or over time
- A focus on support and symptom management rather than a medicine to slow the disease
Aftercare
- Make sure you understand the diagnosis and the plan; ask for it in writing if that helps.
- Ask about specialist and younger-onset support services, and an Admiral Nurse, for the person and family.
- For language forms, ask about speech and language therapy support.
- If a medicine is offered for specific symptoms, understand its purpose and report any worsening of behaviour.
- Plan ahead early — work, finances, lasting power of attorney and future wishes — as FTD can progress.
- Tell the driving licence authority and your insurer if you are advised this affects driving — this is a legal duty. This is the DVLA if you live in England, Scotland or Wales, or the DVA if you live in Northern Ireland.
- Seek support for carers, who often face heavy emotional and practical demands with younger-onset illness.
- Bring the person who knows you best to appointments
- Notes on changes in behaviour, personality or language, with examples
- Any family history of dementia at a younger age
- Full list of current medicines
- Glasses and hearing aids
- Questions written down in advance
- Information on specialist and younger-onset support to look into
⚠ Get urgent help if…
- Behaviour that puts the person or others at risk — seek urgent help; call 999 if anyone is in immediate danger
- Thoughts of harming yourself or others, or feeling unable to go on — contact your GP urgently or call Samaritans on 116 123; call 999 if there is immediate danger
- Sudden confusion or a clear change over hours or days — this may be delirium from illness and needs urgent medical help
- Choking or serious difficulty swallowing, which can occur as the condition advances
- Severe agitation, distress or aggression that cannot be settled
- A medicine seeming to make behaviour markedly worse — seek advice promptly
- Carers reaching breaking point — ask for support before a crisis
Who to contact: your clinician, clinic or test provider first (keep their number to hand). For urgent advice when you can't reach them, call NHS 111. In an emergency, call 999.
General guidance — it doesn't replace the specific advice your psychiatrist gives you.
Results & realistic expectations
A good outcome from assessment is a clear, honest explanation that the changes are due to FTD rather than a purely psychiatric problem, and a plan focused on support, symptom management and planning ahead. For families, simply understanding the cause of distressing changes can be a relief after a long period of uncertainty.
The limits are important. There is no cure, the medicines that help in Alzheimer's are generally not used, and the diagnosis can be hard to make and may need specialist input or review over time. The assessment cannot predict exactly how the illness will progress.
FTD is progressive, and over time it can affect movement, swallowing and physical health as well as behaviour and language. The plan is reviewed over time and support needs usually increase. As the condition advances, the focus shifts towards comfort, dignity, support and planning, with particular attention to the needs of younger people and their families.
Related tests, treatments or support
An FTD assessment often combines old age psychiatry with neurology and, for the language forms, speech and language therapy. Genetic counselling may be offered where a form runs in the family. A careful mental-health assessment is part of the picture, because FTD can be mistaken for a psychiatric illness.
Follow-up & long-term care
After diagnosis, a letter usually goes to your GP, and a specialist or community team agrees how you will be followed up. Reviews focus on symptoms, family support and safety, and the diagnosis may be refined with specialist input. You should be told who to contact between appointments and how to get support.
- Regular review of behaviour, language, swallowing, mood and safety
- Speech and language therapy support for the language forms, where helpful
- Careful review of any medicine used for specific symptoms, watching for worsening behaviour
- Ongoing specialist and family support, including for carers
- Revisiting plans for work, finances, care and future wishes over time
Repeat, follow-on and what comes next
- The diagnosis may be revised once specialist scans, neurology input or genetic results are available.
- FTD is sometimes only recognised after a period of being labelled as depression or another condition.
- Treatment is about managing symptoms; medicines may be tried, reviewed and stopped, and Alzheimer's medicines are generally avoided.
- Support needs are reassessed over time as the illness progresses, often increasing.
Ask what happens if the result is unclear or needs repeating, and what is included if further tests or follow-up are needed.
What good aftercare looks like
- A clear, compassionate explanation of a diagnosis that often hits younger people and families hard.
- A named point of contact and access to specialist and younger-onset support.
- Speech and language support for the language forms, and honest review of any medicine used for symptoms.
- Strong support for carers, who face heavy emotional and practical demands.
- Support with planning ahead — work, finances and legal matters — and honest advice on driving.
What affects the cost
Costs vary a great deal between people and providers, and we don't publish prices. What matters is understanding what drives the cost and making sure your quote is complete. The main things that affect it:
- Length and number of appointments, and whether a consultant or specialist service leads the assessment
- Specialist cognitive, behavioural and language testing
- Blood tests and physical investigations
- Whether a brain scan (MRI or CT) is arranged, and who reports it
- Whether specialist scans (such as PET or SPECT) or genetic testing are needed
- Neurology input, speech and language input, follow-up, and reports or letters
- The consultant or specialist fee for assessment and follow-up
- Specialist cognitive, behavioural and language testing
- Blood tests and who arranges and interprets them
- Any scan fee and the reporting fee
- Whether neurology, speech and language, or genetic counselling are included
- Reports, letters and communication with your GP
- What happens, and what it costs, if the diagnosis is unclear or specialist tests are needed
On the NHS? Assessment for frontotemporal dementia is available on the NHS when clinically indicated, often via a specialist or younger-onset service; private routes are mostly used for speed, choice or a second opinion.
You're entitled to your total cost in writing — including reports, follow-up and what happens if the result is inconclusive — before you decide.
Consent traps and marketing red flags
These are not small details. They are often where patients lose choice, time to reflect, or realistic expectations.
Consent traps
- Treating FTD as a purely psychiatric problem without considering the diagnosis.
- Prescribing an Alzheimer's medicine without explaining it is generally not recommended for FTD and may worsen behaviour.
- A diagnosis without a collateral history, which is essential in FTD.
- Not discussing genetic implications where a form runs in the family.
- Not being told what the diagnosis means for work, driving and insurance, or who sees the report.
Marketing red flags
- Claims that a treatment can cure, reverse or stop frontotemporal dementia.
- Promoting Alzheimer's medicines as a treatment for FTD without explaining they are generally not recommended.
- A single test or scan sold as proof of FTD without a full specialist assessment.
- Supplements or unproven treatments promoted as slowing FTD.
Choosing a specialist safely
- Check the psychiatrist is on the GMC Specialist Register for this area.
- Make sure they work at a CQC-registered service, and look for membership of the relevant Royal College or professional body.
- You're entitled to time to consider and to have your questions answered before you agree — the psychiatrist who looks after you should explain it, not a salesperson.
- Be wary of pressure: time-limited offers or deposits taken before you've had time to think are red flags, not bargains.
- You're entitled to your total cost in writing — including any follow-up — before you decide.
Questions to ask your medical professional
Take this to your consultation. A good psychiatrist will welcome every one of these.
- How confident are you that this is FTD rather than a mental-health condition or another dementia?
- Has a neurologist or specialist service been, or will they be, involved?
- Which form of FTD do you think this is, and what does that mean?
- What treatments might help symptoms, and which medicines should be avoided?
- What specialist support is there for younger people and for my family and carers?
- What does this mean for work, driving, finances and planning ahead?
- Are you on the GMC Specialist Register for this area, and which Royal College or professional body are you a member of?
- Will you be the psychiatrist who carries out my test, and who looks after me afterwards?
- What are the risks for someone like me, and how often do your own patients have a problem or need it repeated or redone?
- What does a realistic result look like — and what can this test not achieve?
- What are my options, including waiting, doing nothing for now, or choosing a different approach?
- Can I have written information, results and aftercare instructions in a format I can use, including any accessibility or communication support I need?
- What is the total cost in writing, including any follow-ups, and how much time do I have to decide?
Frequently asked questions
How is frontotemporal dementia different from Alzheimer's?
Do the Alzheimer's medicines help?
Why does diagnosis sometimes take a long time?
Is it inherited?
Can I get the assessment on the NHS?
What support is there for younger people and families?
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How we made this page
Medically reviewed by a GMC-registered consultant. Written in plain English, checked against NHS, NICE, GMC and relevant Royal College / specialist-society guidance, and kept under review. No clinic paid to appear on this page, and we publish no pricing. This is general information to help you prepare — it is not a substitute for advice from your own clinician. How we review our guides →
Source hierarchy: UK regulator and NHS/NICE guidance first, then relevant Royal College or specialist-society guidance, then peer-reviewed evidence for procedure-specific figures where available.
Sources & standards: Alzheimer's Society — Frontotemporal dementia (FTD) NHS — Frontotemporal dementia NHS — Frontotemporal dementia treatment NICE NG97 — Dementia: assessment, management and support Dementia UK — How is dementia diagnosed? Royal College of Psychiatrists — Memory problems and dementia DVLA — Assessing fitness to drive (England, Scotland and Wales) DVA — Telling DVA about a driver medical condition (Northern Ireland)
Reviews reflect patients' experience of care, not clinical outcomes. For procedure volumes and outcome data see PHIN.
Last medically reviewed 2026-09-21. Spotted something wrong or out of date? Report an error in this guide.
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