Frontotemporal dementia
This form of dementia breaks the usual picture of a brain disease of old age. It tends to begin not after seventy but between forty-five and sixty-five, and…
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Medicines commonly prescribed for Frontotemporal dementia
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: TABLET, 60 mgActive substance: duloxetineManufacturer: Adamed Laboratorios S.L.U.Prescription requiredDosage form: TABLET, 4 mgActive substance: risperidoneManufacturer: Grindeks AsPrescription requiredDosage form: TABLET, 1 mgActive substance: risperidoneManufacturer: Janssen Cilag S.A.Prescription required
This form of dementia breaks the usual picture of a brain disease of old age. It tends to begin not after seventy but between forty-five and sixty-five, and it does not begin with forgetfulness. What changes first is the person: character, manners, the way they treat the people closest to them — or else language, from which the words gradually drain away. Memory, meanwhile, stays almost untouched for a long time, which is why families spend years looking for the explanation somewhere else: depression, a midlife crisis, trouble at work. Understanding arrives late, and a great deal hangs on it, both how to behave with the person and which decisions there is still time to make.
When the personality changes
The commonest variant begins with behaviour. The changes look moral rather than medical, as though the person has simply become worse, and that is the central trap.
- The sense of a boundary disappears: remarks out loud about how strangers look, blunt jokes with people they have just met, subjects they used to steer well clear of.
- Actions turn impulsive: large unconsidered purchases, loans, gambling, a sudden decision to walk out of a job.
- Empathy goes out. Relatives put it better than doctors do: "he looks at me while I'm upset and has no idea what I'm asking for."
- Apathy grows — not sadness, but an absence of wanting and of initiative. It is almost always treated as depression first.
- Repetitive behaviour appears: the same walking route, tapping, one phrase hummed over and over, a meticulous timetable that cannot be disturbed.
- Eating changes sharply: a craving for sweet things, bingeing until nothing more fits, bolting food, sometimes trying to eat things that are not food.
- Washing and changing clothes stop, and the person genuinely sees no problem in it.
That last trait is the most important and the hardest for the family. The person does not register that they have changed and does not consider themselves ill. They are not pretending or being stubborn: the ability to see oneself from the outside is destroyed along with the frontal lobes. Arguing and shaming achieve nothing and hurt both sides.
When the words go
The other variant starts not with behaviour but with speech, and here the person is fully aware of it and suffers. Two main pictures are recognised.
Words lose their meaning. Speech stays fluent and smooth but grows emptier: instead of the specific word come "that thing", "you know, that". The person may ask "what are scissors?" — a question that at first sounds like a joke. Familiar faces and the purpose of objects are forgotten.
Speech falls apart mechanically. The opposite: the words are still known but harder and harder to produce. Speech becomes slow and halting, sounds swap places, small words and endings drop out of sentences. Understanding, by contrast, is preserved for a long time.
Some people eventually stop speaking altogether. That does not mean they have stopped understanding, and it is worth remembering for everyone who ends up beside them.
Movement and muscle: what else it turns into
In some people, physical changes join the changes in behaviour and language. Movements slow down and stiffen as in Parkinson's disease, balance worsens, an arm seems to live a life of its own, the eyes move up and down with difficulty.
The overlap with motor neurone disease deserves a paragraph of its own. In roughly one person in ten there is weakness and wasting of muscles, twitching visible under the skin, a change in the voice and choking on food. This is no coincidence: the two conditions can share a genetic cause. The course is then noticeably faster, and knowing that in advance makes it possible to settle questions of feeding and care while the person can still take part in deciding them.
What happens in the brain, and where inheritance comes in
Proteins that should not linger there build up in the cells of the frontal and temporal lobes, most often tau protein or TDP-43. The cells die and the lobes gradually shrink. Those regions are precisely the ones responsible for self-control, planning, empathy and language, which is why the picture takes this shape and no other: what fails is not the store of memories but whoever is in charge of it.
Inheritance counts for more here than in other dementias. Around a third of those affected have relatives with the same diagnosis, and sometimes with motor neurone disease or an early psychiatric illness. Several genes are known to be involved and can be tested for, but the decision to test is discussed with a geneticist and with the family before any blood is taken: the result cannot be unlearned afterwards, and it concerns not only the person tested but their children too.
How the diagnosis is reached
There is no single test. What weighs most is the account of someone who lives with the person: what changed and when, what was not happening five years ago. Patients themselves will usually describe the situation as perfectly normal, and that is not obstruction but part of the illness, so it is worth attending the appointment together and writing the observations down beforehand. The doctor then chooses the investigations.
- Full neuropsychological assessment, covering planning, mental flexibility and language. The brief memory tests generally used to screen for dementia can come back normal in the early stage of this illness, and a normal result should not close the question.
- MRI of the brain, which shows loss of volume in the frontal and temporal lobes, often lopsided. Where the picture is unclear, PET helps: it detects the drop in metabolism in those same areas before the shape of the brain changes.
- Blood tests: thyroid, vitamin B12, markers of inflammation, infections. The point is to find conditions that mimic this one and can be treated.
- Examination of the spinal fluid, chiefly to separate it from Alzheimer's disease, which leaves its own signature there.
There is one situation in which the assessment cannot wait months: when behaviour or speech change over weeks rather than years, and all the more so alongside seizures, headache, fever or confusion. That course speaks not of degeneration but of inflammation of the brain, a tumour or disturbed circulation of the fluid, and some of those causes are treated successfully if they are caught in time.
What helps and what does not
There is as yet no medicine that stops the disease. Plenty can still be done, and it is worth starting with the part that is almost never said aloud in the consulting room.
The drugs prescribed for Alzheimer's disease do not work here. In some people they even increase agitation and irritability. If such treatment has already been started and behaviour has worsened, that is worth raising with the doctor specifically.
What is actually used:
- antidepressants from the group that acts on serotonin, which often soften disinhibition, compulsive rituals and overeating;
- antipsychotics, only for aggression or behaviour that endangers the person or those around them, in short courses and under supervision: sensitivity to them is unusually high in this illness and side effects come on readily;
- speech and language therapy, less to bring speech back than to move in good time to cards, gestures and a tablet while the person can still learn to use them;
- occupational therapy and physiotherapy, for safety at home, balance and swallowing;
- practical measures: an unvarying daily routine, a calm setting, redirecting attention instead of arguing, limiting access to sweet food and to money.
And separately, help for the relatives themselves. Carers burn out faster here than in other dementias, because the illness strikes at conversation and at the feeling of being loved. Support groups that bring together families with the same diagnosis usually prove more use than any advice from outside.
What is worth settling early
The illness unfolds over years, and its first year is the best time for decisions that later cannot be made at all. While the person can still express their wishes, the essentials are worth discussing and putting in writing.
- A power of attorney over affairs and property, and a limit on access to large sums and to credit: impulsive spending and trustfulness towards fraudsters are a typical early symptom, not bad luck.
- Advance statements about treatment and care, including tube feeding should swallowing fail.
- Driving. Reading the traffic and braking in the face of danger deteriorate early, while the person is convinced they drive exactly as before. It is a painful conversation, and it goes better held once with a doctor than argued over every week.
- Leaving work, if the person is still working, and who will provide care later on, at home or in a specialist setting.
The pace is hard to predict: it is usually a matter of several years from the first signs, most often eight to ten, though the spread is wide and the overlap with motor neurone disease shortens it. Step by step the person comes to need help with everything and, at some stage, continuous care.
Online consultation
A remote consultation fits particularly well at the point where things are just beginning and the family has no idea whom to see or what is going on. The doctor will go through what exactly changed and in what order, separate depression and exhaustion from the neurological picture, and explain which investigations make sense and in what sequence. Online is also a convenient place to discuss MRI and neuropsychology reports you already hold, to review prescribed drugs if behaviour has deteriorated on them, and to get clear guidance for daily life at home. A rapid change of behaviour over weeks, with headache, seizures or fever, is not assessed through a screen: that needs to be seen in person without delay.
This material is for information only and does not replace medical advice.
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