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Frontotemporal dementia (FTD)

How frontotemporal dementia changes personality and behavior, why it starts younger, the role of genes, why it is often misdiagnosed, and where to find help.

Facts last checked October 2026 · 11 min read

Frontotemporal dementia (FTD) is a group of brain diseases that damage the front and side parts of the brain. These areas guide personality, behavior, judgment and language. As nerve cells there die, the brain areas shrink.1

FTD often starts in a person's 40s, 50s or early 60s, while they are still working and raising a family.1,3 The first changes are often in behavior, not memory. Families may think the person is depressed, going through a midlife crisis, or simply being difficult. Knowing the signs can lead to a correct diagnosis sooner and to the right kind of help.

Key points

  • FTD is a leading cause of dementia that starts before age 60. About 6 in 10 people with FTD are between 45 and 64.1
  • The most common form, behavioral variant FTD, changes personality first. Signs include acting without a filter, losing interest, losing empathy, and new eating habits.1,4
  • Memory often holds up well early on, which is one reason FTD is mistaken for depression or another mental illness.4
  • About 1 in 3 cases runs in families. Changes in three main genes cause most inherited cases.1
  • There is no cure yet, but medicines, routines and a calm care approach can ease many symptoms.2,4

What is frontotemporal dementia?

Frontotemporal dementia is not one disease. It is a family of related disorders. Doctors also call them frontotemporal disorders or frontotemporal lobar degeneration. An older name is Pick's disease.1

The frontal lobes sit behind the forehead. They help us plan, control impulses, and behave in ways that fit the situation. The temporal lobes sit behind the ears. They help us understand words, recognize faces and objects, and read other people's feelings.1

FTD is rare compared with Alzheimer's disease. The Association for Frontotemporal Degeneration (AFTD) estimates that about 60,000 people in the United States have it.3 It is the most common type of dementia in people under 60.5

The main types of FTD

FTD can show up in three main ways, depending on which brain areas are hit first.1,3

TypeWhat changes firstLearn more
Behavioral variant FTD (bvFTD)Personality, behavior, judgment, empathyThis page
Primary progressive aphasia (PPA)Speaking, finding words, understanding word meaningsPrimary progressive aphasia
Movement typesStiffness, balance, falls, eye movements, or muscle weakness. These include corticobasal syndrome, progressive supranuclear palsy (PSP), and FTD with ALS (a disease of the nerves that control muscles)Ask a neurologist or movement specialist

Over time, the types can overlap. A person who starts with behavior changes may later have trouble with language or movement.1

The rest of this page focuses on behavioral variant FTD. It accounts for about half of all FTD cases.4

Signs of behavioral variant FTD

In behavioral variant FTD, the person slowly becomes "not themselves." Family members often notice the change long before the person does. Many people with FTD do not see that their behavior has changed.1,4 This lack of awareness is caused by the illness. It is not stubbornness. See when the person doesn't know they are ill.

Experts use six key features to diagnose behavioral variant FTD. A doctor looks for at least three of them, and they must keep getting worse over time.6

Mood can change too. Some people become irritable, restless or agitated.4

Often seen in early behavioral variant FTD

  • Personality and behavior change first
  • Memory often fairly good at first
  • Usually starts between 45 and 64
  • Person often unaware of the change

Often seen in early Alzheimer's disease

  • Memory loss comes first, such as forgetting recent talks
  • Behavior and manners often stay the same early
  • Usually starts after 65
  • Person may notice and worry about memory slips

This chart shows common patterns, not rules. Some people do not fit them.4,6 Read more about Alzheimer's disease.

Why FTD starts younger, and what that means

Most people with FTD first have symptoms between 45 and 64. But it can begin as early as the 20s or as late as the 80s.3

Starting in midlife brings special problems. The person may lose a job before anyone knows why. Money may be spent badly or lost. A spouse may be caring for a partner while also working and raising children. Friends and coworkers may pull away because they think the person has simply changed. Read more about caring for a husband or wife and working while caregiving.

People under 65 who can no longer work may qualify for Social Security disability benefits. See Social Security disability for young-onset dementia.

In older adults. FTD can also start after 65. In older people it can be harder to spot. In the study that built today's diagnostic rules, people whose FTD was missed were more likely to be older and to have marked memory loss.6 If an older person has a big change in personality or behavior, it is fair to ask the doctor whether FTD could be the cause.

Why FTD is often mistaken for a mental illness

Early behavioral variant FTD is often misdiagnosed. It may be called depression, another psychiatric disorder, or alcohol or drug misuse. It can also be confused with Alzheimer's disease, vascular dementia or Parkinson's disease.4,3

There are several reasons:

  • The first signs are changes in behavior and mood, not memory loss.
  • Standard short memory tests may come out normal early on.
  • The person is often middle-aged, an age when doctors do not expect dementia.
  • The person may deny that anything is wrong.

On average, it takes about 3.6 years to get an accurate diagnosis of FTD.3 That delay can mean years of the wrong treatment, family conflict and lost chances to plan.

Signs that point toward a brain disease rather than only a mental illness: big personality changes starting in midlife with no past mental illness, steady worsening over months to years, new cravings for sweets, loss of empathy, and not seeing that anything has changed.4,6 If treatment for depression or another mental illness is not helping and these signs are present, ask for a referral to a neurologist or a memory clinic that knows FTD. See which specialist to see.

AFTD offers a checklist of bvFTD symptoms that families can fill out and bring to the doctor.4

How FTD is diagnosed

There is no single test for FTD. A doctor puts together information from several sources:1,4

  • A detailed history from the person and from someone who knows them well. The family's report is often the most useful part.
  • A physical and neurological exam
  • Blood tests to rule out other causes. See treatable conditions that look like dementia.
  • Tests of thinking, behavior and language. See memory and thinking tests.
  • Brain scans. An MRI may show shrinking in the front or side of the brain. Sometimes a PET scan is used. See brain scans.
  • A psychiatric evaluation to check for other conditions
  • Genetic testing when there is a family history

Doctors use the terms "possible" and "probable" FTD. Probable FTD adds clear loss of daily function and brain scan changes that fit the disease.6 FTD can be confirmed for certain only by finding a disease-causing gene change or by examining the brain after death.1,4

Genetics: does FTD run in families?

About 1 in 3 cases of FTD is inherited.1 For behavioral variant FTD alone, AFTD estimates that 10% to 30% is caused by a single gene change. About 40% of people with FTD have at least one relative with a brain disease such as dementia, ALS or Parkinson's.4

Three genes cause most inherited FTD:1,4

  • C9orf72. The most common gene change in families with FTD. It can also cause ALS. Some families have both.
  • GRN (the progranulin gene).
  • MAPT (the tau gene).

Other genes account for a small share of cases.1 In most inherited FTD, a parent with the gene change has a 1 in 2 chance of passing it to each child.

Genetic testing can find many of these gene changes.1 But a result can affect brothers, sisters and children too. Most experts advise talking with a genetic counselor before and after testing. Read more on genes and dementia.

Treatment and what helps

There is no cure yet. No treatment slows or stops FTD.2 Care focuses on easing symptoms and keeping the person safe. A team often helps, including doctors, nurses, and speech, physical and occupational therapists.2

Medicines. No medicine is approved by the FDA for FTD. Doctors may use some medicines "off-label" (for a use not on the label) to ease symptoms:2,4

  • SSRI antidepressants are often tried for disinhibition, impulsive acts, irritability and apathy. Limited research
  • Trazodone helped eating behaviors and mood in small controlled studies. Limited research
  • Antipsychotics are sometimes used at low doses for aggression, severe agitation or delusions. They carry real side-effect risks and are not approved for FTD.2,4 See medicines for agitation and behavior.

If one medicine does not help, the doctor may try another.2 Talk with your doctor or pharmacist before changing anything.

Non-drug approaches. AFTD calls behavior and environment changes the most effective way to manage symptoms.4 NIA suggests these ideas:2

  1. Accept, don't argue. The person often cannot control the behavior. Arguing or correcting usually makes things worse.
  2. Take a break when you need one. Step out of the room for a moment or take a few slow breaths. Try the cyclic sigh.
  3. Offer clear choices. For apathy, ask "Do you want to walk or fold laundry?" instead of "What do you want to do?"
  4. Keep a steady daily schedule. Cut down on noise and clutter. See building a good daily routine.
  5. Manage food carefully. Supervise meals, limit choices, and lock cabinets or the refrigerator if needed. Redirect to an activity.

A behavior diary can help you spot what triggers hard moments and share patterns with the doctor.

Planning for safety

Because judgment fails early, safety and money planning should start soon after diagnosis:

  • Driving. Poor judgment and impulsive acts can make driving unsafe even when memory is good. See driving and dementia.
  • Money. Overspending, gambling and falling for scams are common. Consider setting spending limits and adding a trusted contact at the bank. See scams and financial abuse.
  • Legal papers. Sign a power of attorney and an advance directive while the person can still take part.
  • Behavior in public. A small card that says "My family member has a brain disease. Thank you for your patience" can ease awkward moments.

How FTD changes over time

FTD gets worse over time, but the pace is very hard to predict.1 AFTD reports that the illness can last from about 2 years to more than 20 years. On average, people live 7 to 13 years after symptoms begin.3 In later stages, many people need full-time care, sometimes outside the home.4 The most common cause of death is pneumonia.3

Care can be costly. One study found yearly costs of about $120,000, roughly double the figure tied to Alzheimer's.3 Read about what dementia care costs and palliative care, which can help at any stage.

Research and clinical trials

Researchers are testing treatments, especially for inherited FTD. In October 2025, a large trial of a drug called latozinemab, for people with FTD caused by GRN gene changes, did not slow the disease. The drug raised progranulin levels but did not change symptoms or brain scan results.5 Other approaches, including gene therapy, are still being studied.5

People with FTD and their family members, including those who carry an FTD gene but have no symptoms, may be able to join studies. See joining a dementia clinical trial.

Support for families

FTD can be lonely for families. Friends may not understand, and many dementia groups are geared toward older people with memory loss. AFTD (theaftd.org) is a national nonprofit focused only on FTD. It offers information, a diagnostic checklist, education for care partners, and support group listings.3,4

Caring for someone with FTD is hard work. Your own health matters. See caregiver stress and burnout, respite care, and care circle to share tasks with others.

When to get help

  • See a doctor if a person in midlife or later has steady changes in personality, behavior, judgment or language over several months.
  • Ask for a specialist if a mental health diagnosis does not fit or treatment is not helping.
  • Call 911 if the person is in danger, is a danger to others, or has sudden new symptoms such as weakness on one side or trouble speaking.
  • Call or text 988 if you or the person with FTD has thoughts of suicide or is in emotional crisis.

Sources

  1. National Institute on Aging. What are frontotemporal disorders? Causes, symptoms, and treatment. NIH, 2025. NIA
  2. National Institute on Aging. How are frontotemporal disorders treated and managed? NIH, 2025. NIA
  3. Association for Frontotemporal Degeneration. Disease overview. AFTD, 2026. theaftd.org
  4. Association for Frontotemporal Degeneration. Behavioral variant FTD (bvFTD). AFTD, 2026. theaftd.org
  5. Association for Frontotemporal Degeneration. Alector Therapeutics announces results from their phase 3 clinical trial evaluating latozinemab. AFTD, 2025. theaftd.org
  6. Rascovsky K, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 2011. PubMed

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.