Frontotemporal Dementia: Behaviour Changes and Daily Life

Frontotemporal dementia (FTD) is a type of dementia caused by damage to the front and side parts of the brain, the areas that handle behaviour, judgement, personality and language. It often starts younger than other dementias, commonly between the ages of 45 and 65, and in the early stages memory is usually much less affected than you would expect. Instead, the person may become tactless, impulsive, withdrawn, oddly fixated on certain foods or habits, or start to struggle to find or understand words.

That is why FTD is so often missed at first. It looks like a personality change, a midlife crisis, depression or a marriage in trouble, not dementia. If someone you love has changed in ways that make no sense, this guide explains what FTD is, the changes families commonly see, and the practical things that make daily life more manageable. None of the behaviour described here is the person being difficult on purpose. It is the illness.

What frontotemporal dementia is, in plain terms

FTD is an umbrella term for a group of conditions. They are progressive, which means they get worse over time, though the speed varies a great deal from person to person. The NHS says some cases run in families, so it is worth mentioning any family history of dementia, motor neurone disease or unexplained psychiatric illness to the GP.

Behavioural variant FTD

This is the most common form. The main changes are in behaviour and personality: loss of social awareness, impulsiveness, loss of interest and drive, rigid routines, changes in eating and a reduced ability to understand how other people feel. The person often does not notice these changes themselves.

Language variants (primary progressive aphasia)

Here the first signs are with language. Some people lose the meaning of words, so they might ask what a "fork" is or describe things vaguely. Others keep the meaning but find speech slow, effortful and broken, with mistakes in grammar or sounds. Behaviour changes may come later, or not much at all.

In a smaller number of people, FTD occurs alongside motor neurone disease or other movement problems, such as stiffness, weakness or difficulty swallowing. A specialist will look for these.

Common behaviour changes, and what they mean

Every person is different, but these are the changes families most often describe.

• Disinhibition. Saying rude or hurtful things out loud, making inappropriate jokes or sexual comments, talking to strangers too familiarly, taking things from shops without paying. The brain's brake has stopped working.
• Apathy. Losing interest in work, hobbies, family and personal care. Sitting for hours. This is often mistaken for laziness or depression. It is not a choice.
• Loss of empathy. Seeming cold or indifferent when someone is upset or ill. For partners and children this is often the hardest change of all.
• Compulsive and repetitive behaviour. Hoarding, collecting, walking the same route, clock-watching, repeating phrases, or insisting on exactly the same routine.
• Changes in eating. A strong craving for sweet food, overeating, cramming food into the mouth, eating the same thing every day, drinking more alcohol, or occasionally trying to eat things that are not food.
• Impulsive spending. Buying things online or on the phone, signing up to offers, gambling, giving money to strangers or falling for scams.
• Language problems. Word-finding difficulty, losing word meanings, or speech becoming slow and effortful.
• Lack of insight. The person often genuinely does not believe anything is wrong. Arguing them into agreement rarely works.

Keep a short diary of specific examples with dates. It helps the GP and specialists enormously, and it helps you see patterns in what sets things off.

Getting a diagnosis

Start with the GP. Take your diary, and if possible go with the person, as they may not be able to describe the changes. Because memory tests can look normal early on, it is worth saying clearly that the main change is in behaviour, personality or language. The GP may refer to a memory service, a neurologist or a specialist cognitive clinic. Diagnosis can take time and may involve brain scans and detailed thinking and language tests.

If behaviour changes come on suddenly over days, or with confusion, fever, a severe headache, weakness on one side or slurred speech, that is not something to wait on. Call 999 for stroke symptoms, or NHS 111 if you are unsure.

Day-to-day strategies that help

You cannot reason FTD away, and you cannot change the person's brain. What you can change is the environment and the routine around them. That is where most of the wins are. Our dementia condition page covers broader support too.

Structure and routine

Many people with FTD do better with a predictable day: the same wake time, meals at the same times, a familiar walk, a regular activity. Rigid routines can be a symptom, but you can also use them. If the person insists on a 3pm walk, build the day around it.

• Plan activities the person can still do and enjoy, even if they will not start them alone. Apathy means they may need you to begin the task with them.
• Offer simple choices rather than open questions: "Toast or cereal?" works better than "What do you want?"
• Break tasks into single steps. Lay clothes out in order. Put the toothbrush by the tap.
• Build in quiet time. Overtired days tend to be worse days.

Reducing triggers and handling the moment

Notice what sets off difficult behaviour: crowds, noise, hunger, being rushed, being told "no", busy shops. Shop at quiet times, sit at the edge of cafés, and keep outings short.

When something goes wrong in public, calm and brief works better than explaining or correcting. Distract, redirect and move on. Some families carry small discreet cards saying the person has dementia and to please be patient, which saves awkward explanations. If the person takes things from shops, speak privately to the manager where possible and shop with support to prevent it, as this can still be treated as theft even if you offer to pay afterwards. Telling the person off afterwards rarely helps, because they may not understand why.

If behaviour becomes aggressive or you feel unsafe, step away and get help. Call 999 in an emergency. Tell the GP or memory service about any aggression, because there may be support available that you do not know about.

Money and online spending

This is one of the most damaging areas for families, partly because it can happen quietly and quickly. Practical steps:

• Talk to the bank early. Ask about third-party access, spending limits, blocks on gambling transactions and alerts for large payments. Many banks offer some of these.
• Remove saved card details from shopping sites, apps and devices. Consider a prepaid card with a small weekly amount for the person's own spending.
• Register the household with the Telephone Preference Service and screen calls. Put a no cold callers sign on the door.
• Check post for credit agreements, catalogues and subscriptions.
• If the person is still able to, set up a Lasting Power of Attorney for property and financial affairs if you are in England or Wales (more on this below); if you are in Scotland or Northern Ireland, the equivalent arrangements have different names and processes so check the relevant national guidance.

Try to do this in a way that protects dignity: a small amount of money the person controls freely can reduce conflict.

Food, the kitchen and safety

Changes in eating can lead to weight gain, dental problems and, in some cases, choking risk. Locking everything away often makes things worse, so start with lighter touches:

• Keep tempting foods out of sight or out of the house. Put a fruit bowl or prepared snacks where biscuits used to be.
• Serve smaller portions on smaller plates, and plan regular meals and snacks so the person is not hungry.
• If food is being crammed in or swallowed without chewing, cut it into smaller pieces and sit with the person at meals.
• Keep cleaning products, medicines and anything that might be mistaken for food out of reach.
• Watch for unsafe cooking: pans left on, the oven used for odd things. Isolating valves, automatic shut-off devices and timers on the hob can help.

Our guide to cooking with dementia goes into this in more detail. If the person coughs, chokes or splutters at meals, ask the GP for a speech and language therapy referral. That is their area, not an OT's.

Driving

Impulsiveness, poor judgement and reduced awareness of risk can make driving dangerous even when memory seems fine. In general, if someone is diagnosed with dementia they must tell the DVLA, and their car insurer should be told too. Check the current rules on GOV.UK. The DVLA may ask for medical information or a driving assessment. Our article on dementia and driving covers how to have that conversation, which with FTD can be especially hard because of lack of insight. If you believe someone is unsafe to drive right now, speak to their GP straight away.

Work and money when it starts in midlife

Because FTD often begins in a person's 40s, 50s or early 60s, many people are still working when it starts. Problems at work can be the first sign: missed deadlines, odd emails, falling out with colleagues, poor decisions. Sometimes people are disciplined or dismissed before anyone knows they are ill.

If the person is still employed, a diagnosis matters. In England, Scotland and Wales, dementia is likely to count as a disability under the Equality Act 2010, which means employers have a duty to consider reasonable adjustments; in Northern Ireland the equivalent protections are under different legislation so take local advice. Get advice before agreeing to leave, as ill-health retirement, pension rights and income protection policies may be worth a lot more than a quick exit. ACAS and Citizens Advice can explain the options.

Check benefits too. Personal Independence Payment is for people under State Pension age; Attendance Allowance is for those over it. Carers may be entitled to Carer's Allowance. People with dementia may also be eligible for a council tax discount or exemption on the grounds of severe mental impairment, so ask your local council. Rules change, so check GOV.UK or with Citizens Advice.

The strain on carers and young families

FTD caring is different. The person may look physically well, still be capable of many things, and yet be unable to show warmth or understand what you are going through. Partners often describe grieving someone who is still there. Friends may not understand, and services designed around older people with memory problems may not fit.

If you have children at home, they will notice. Explain in words that suit their age that a parent's brain is unwell and that the hurtful things are the illness, not about them. Tell the school, so staff can keep an eye out. Young carers are entitled to an assessment of their needs from the council.

You are entitled to a carer's assessment from adult social care, whatever your income. Our guide to the carer's assessment explains what to ask for. Specialist charities, especially Rare Dementia Support, run groups for people affected by FTD, where other families will recognise exactly what you are describing. Many carers say that is the first time they felt understood.

Planning ahead

FTD can affect judgement and understanding earlier than families expect, so it is worth acting soon after diagnosis.

• Lasting Powers of Attorney (England and Wales). There are two types: property and financial affairs, and health and welfare. They must be made while the person still has mental capacity to make them. Details are on GOV.UK for England and Wales, and there is separate official guidance for Scotland and Northern Ireland.
• Wills. Make or update them while possible.
• Advance statements. A record of the person's wishes, values and preferences about care.
• Genetics. If there is a family history, the specialist may discuss genetic counselling. This is a big decision and best made with proper support.
• An emergency plan. Who steps in if you are ill.
• Future care. Find out what day services, respite and care options exist locally, including any that suit younger people.

Where an occupational therapist fits

An occupational therapist focuses on daily life: what the person can still do, what is getting in the way, and how to set up the home and routine so things run more smoothly and safely. With FTD, a private occupational therapist visiting at home can:

• Observe how the person manages everyday tasks such as washing, dressing, cooking and getting out, and suggest ways to break them down or prompt them.
• Help design a daily structure built around the person's interests and routines, which can reduce apathy and difficult moments.
• Look at kitchen, bathroom and general home safety, and recommend equipment or changes where needed.
• Suggest ways to manage triggers at home and when going out.
• Write a report describing daily living needs, which can help with benefit claims, care assessments or discussions with an employer.

An OT does not diagnose FTD, prescribe medication or manage behaviour that is a psychiatric emergency. Diagnosis and medical care sit with the GP, memory service and neurology. Speech and language therapists lead on communication and swallowing. Physiotherapists help with movement problems. Social workers lead on care packages and safeguarding. An OT works alongside them, often filling the gap between diagnosis and day-to-day reality.

Frequently asked questions

Does frontotemporal dementia affect memory?

Usually not much at first. The early changes are mostly in behaviour, personality or language. Memory problems may develop later as the illness progresses.

Is frontotemporal dementia inherited?

Some cases run in families, but many do not. If there is a family history of dementia or motor neurone disease, mention it to the specialist, who can discuss whether genetic counselling is appropriate.

Why does the person not realise anything is wrong?

Lack of insight is a feature of FTD, caused by damage to the parts of the brain that let us reflect on ourselves. It is not denial or stubbornness, which is why arguing rarely helps.

Should I lock the food cupboards?

Try lighter measures first: removing tempting food, regular meals and smaller portions. If there is a real safety risk, more restrictive steps may be needed, but talk them through with the GP or memory service, as any restriction should be the least restrictive option and in the person's best interests.

Can someone with FTD keep working?

Sometimes for a while, with adjustments, though it depends on the job and the changes. Get advice before resigning or agreeing to leave, as pension and income protection rights may be affected.

Is there a cure for frontotemporal dementia?

There is currently no cure and no treatment that stops it progressing. Support focuses on managing symptoms, keeping daily life as good as possible and supporting families. The specialist team can explain what is available.

Next steps

See our neurological occupational therapy page, or current guide prices, and choose your area below to find an occupational therapist who can visit at home.