Your dad, always careful with money and polite to a fault, has started making crude jokes to strangers, eating whole boxes of cookies, and buying things online he doesn't need. He doesn't seem to notice or care when the family is upset. At first everyone thought it was a midlife crisis or depression. Then a neurologist mentioned frontotemporal dementia.
Frontotemporal dementia, or FTD, is a group of disorders caused by a loss of nerve cells in the frontal and temporal lobes of the brain, areas that shape personality, behavior and language1. It's rare compared with Alzheimer's, and it usually begins between ages 45 and 642. Because early symptoms look like personality or mental health changes, diagnosis often takes time. This guide explains what families need to know. It's general information. Your loved one's doctors will guide care. For other types, see Lewy body dementia and vascular dementia.
What frontotemporal dementia is
In FTD, abnormal substances, including tau proteins, build up inside nerve cells in parts of the brain, and those areas shrink over time2. The exact cause isn't known. Many different gene changes can cause FTD, and some cases run in families2.
FTD can occur in people as young as 20, but it usually begins between 45 and 642. That means the person may still be working, raising children or caring for their own parents. Some forms of FTD overlap with other conditions, such as ALS, primary progressive aphasia and progressive supranuclear palsy2.
Symptoms of frontotemporal dementia
Symptoms come on slowly and get worse over time. Early personality changes help doctors tell FTD apart from Alzheimer's, where memory loss is usually the first sign2. Common symptoms include2:
- Behavior changes. Impulsive or inappropriate behavior, compulsive or repetitive actions, poor hygiene, and trouble functioning at work or in social settings.
- Emotional changes. Abrupt mood changes, loss of interest in daily life, and loss of warmth, empathy or concern for others. The person often doesn't recognize these changes.
- Language changes. Trouble finding words, understanding speech, reading or writing, a shrinking vocabulary, and eventually loss of speech.
- Movement and thinking problems. Stiffness, coordination problems, weakness and, later, memory loss.
- Other changes. Urinary incontinence.
Overeating, a strong craving for sweets, and unusual spending or risky decisions are often reported by families as well. Changes in personality, behavior and language are among the hallmark features1.
Behavior-led and language-led forms
Doctors describe several forms of FTD based on which symptoms come first. In the behavioral form, personality and conduct change first. In the language forms, often called primary progressive aphasia, trouble speaking or understanding words comes first, while behavior may stay fairly normal for a time2. Some people also develop movement problems, including parkinsonism1. Over time, the forms often overlap. Knowing which form your loved one has helps the family understand what to expect. Someone with a language form may need speech therapy and communication tools early, such as picture boards or written notes, while someone with the behavioral form may need close supervision and help with money and safety much sooner. Ask the doctor to explain the form in plain terms and how it may change over the coming years.
FTD vs. Alzheimer's and other dementias
- Age. FTD usually starts between 45 and 64. Alzheimer's is most common after 652.
- First symptoms. FTD: personality, behavior or language. Alzheimer's: memory loss2.
- Insight. People with FTD often don't recognize their own changes2.
- Other dementias. Lewy body dementia often brings visual hallucinations and fluctuating alertness, and vascular dementia follows strokes.
Because early FTD can look like depression, bipolar disorder or a midlife crisis, families sometimes wait years for answers. If personality changes seem out of character and keep getting worse, ask the doctor whether your loved one should see a neurologist. See early signs of dementia.
How it's diagnosed
FTD is diagnosed from symptoms and test results2. Doctors take a history, often relying heavily on family reports, and do a neurological exam and thinking and behavior testing. Brain MRI or CT, PET scans, EEG and sometimes a spinal fluid test may be used. Tests also look for other causes of symptoms. Genetic testing can find known gene changes and support the diagnosis2. If FTD runs in the family, genetic counseling can help relatives decide whether to be tested.
Stages and life expectancy
FTD steadily gets worse, and people can become severely disabled relatively early in the illness2.
- Early stage. Personality, behavior or language changes; the person may still look physically well and manage some routines.
- Middle stage. More obvious behavior or language problems, need for supervision, and help with hygiene and daily tasks2.
- Late stage. Loss of speech, movement problems, incontinence and need for 24-hour care2.
FTD commonly causes death within about 8 to 10 years, usually from infection or failure of other body systems, though the course varies2. Some genetic forms progress over 5 to 10 years after symptoms appear, with a few people living far longer1.
Treatment
There's no specific treatment for FTD2. Care focuses on symptoms and safety:
- Medicines for mood and behavior. Some can help with mood swings, agitation or dangerous behavior2.
- Reviewing current medicines. Stopping or changing medicines that worsen confusion can sometimes help2.
- Treating other illnesses. Infections, thyroid problems, depression and other conditions can worsen confusion2.
- Behavior strategies. Rewarding positive behavior and safely ignoring inappropriate behavior can help some people2.
- Speech therapy. For language-led forms, to keep communication going as long as possible.
Talk therapy doesn't always help, since it can add to confusion2. Simple cues and steady routines that reinforce time and place may reduce disorientation instead2.
Coping with behavior changes
- Remember it's the illness. Rude comments, impulsive acts and loss of empathy come from brain changes, not a choice.
- Avoid arguing. Redirect to another activity, and keep explanations short.
- Reduce temptations. Limit access to credit cards, online shopping, car keys and unhealthy foods.
- Keep routines structured. Predictable days with physical activity reduce restlessness.
- Carry an explanation card. A small card saying "My family member has a brain disease called FTD" helps in public.
- Ask for help with dangerous behavior. Tell the doctor right away about aggression, wandering or unsafe driving.
See dementia anger and aggression, dementia wandering and person-centered dementia care.
Protecting money, work and driving
Poor judgment and impulsive spending are common early in FTD, and the person often doesn't see the problem. Act early. Put a durable power of attorney in place while your loved one can still sign it, set up account alerts and spending limits, and watch for scams. See managing a parent's finances and elder financial abuse.
Driving can become unsafe because of risky decisions, even when skills seem intact. See when should someone stop driving. If your loved one is still working, job problems may be the first sign. Ask the doctor about documentation for disability benefits and workplace protections.
Explaining FTD to children, friends and coworkers
Because FTD often strikes in midlife, children and teens may live with a parent whose personality is changing. Explain in simple, honest words that a brain illness is causing the changes, that it isn't their fault, and that the parent still loves them even if they can't show it. Let teachers or counselors know so they can offer support.
Friends, neighbors and coworkers may be confused or hurt by rude or unusual behavior. A short explanation, or the explanation card mentioned above, can turn embarrassment into understanding. Many families find it easier to share news gradually with the people who are most involved.
Hospital stays and emergencies
Hospitals can be hard places for people with FTD, who may be restless, impulsive or unable to follow instructions. Bring a short summary of the diagnosis, current medicines, triggers, what calms your loved one, and your contact details. Ask that it go in the chart. Stay with them when you can, and ask the team to check for infection, pain or medicine effects if behavior suddenly worsens2. See hospital discharge planning.
Legal planning
People with FTD and their families may need legal advice early, because judgment can decline before memory does2. An advance directive and power of attorney make later decisions much easier23. If those weren't put in place in time, guardianship may be needed. See power of attorney and guardianship.
Care at home and beyond
Depending on symptoms, people with FTD need monitoring and help with hygiene and self-care, and eventually 24-hour care at home or in a facility2. Home help may include aides, visiting nurses and community services2. Finding memory care that's comfortable with younger, physically strong residents with behavior changes can take effort. Ask how staff handle disinhibition and restlessness. Visit at different times of day, ask about activities for younger residents, and find out how the community decides when behavior is more than it can manage. See how to choose memory care and secured memory care units.
Late-stage care and hospice
In late stages, people with FTD lose speech and movement and are at high risk of infections2. Palliative care helps at any stage, and hospice when a doctor certifies six months or less to live45. Medicare contractors consider functional decline, such as the ability to walk, speak and eat, when judging hospice eligibility for dementia6. See hospice for dementia.
Support for families
FTD is especially hard on spouses and children because of the personality changes and because it strikes in midlife. Support groups help families feel less alone and share practical tips2. Family counseling can help everyone adjust2. Spouses often lose a partner, an income and future plans all at once, and may grieve while still caregiving. That grief is normal. Talk with a counselor, keep up friendships and look after your own health. Take breaks and accept help. See respite care and caregiver burnout.
