Dementia is when the brain experiences difficulties in memory and thinking because of changes to the brain. Frontotemporal dementia (FTD) occurs when changes are in the frontal and temporal lobes (the front and side lobes, respectively) of the brain.
The frontal lobes of the brain are responsible for processes that are important for social interaction, such as personality traits, controlling impulses, and recognizing other people’s emotions. Language, voluntary movement, and high-level cognitive skills like planning and problem-solving also arise from the frontal lobes. The temporal lobes are important for storing memories and processing language.
Frontotemporal dementia causes a decline of these important functions.
The disease most commonly affects people between the ages of 40 to 65. It is one of the most common types of early onset dementia.
The most common symptoms are related to language, behavior, and personality. Studies show that half of people with the disease have behavior and personality changes, and half have language and memory changes. But all eventually experience significant declines in their cognitive abilities and higher executive functions.
It is common for people to think the behavior problems are some kind of midlife crisis, or that the person with the illness is in control of their behavior. It’s important to understand that their brain is changing in a way that makes them seem difficult, unpredictable, or uncaring. It’s not a choice they are making. —Dr. Farrah Daly
Personality changes, impulsive behavior, and impaired judgment
- They may wash themselves less often.
- They may engage in risky behaviors.
- They may start making poor decisions with their money and savings.
- They may hoard food or other items, and may compulsively overeat.
- Sometimes they are misdiagnosed with a psychotic break.
- Someone may understand language but have difficulty speaking actual words.
- They may have difficulty processing language and use words that don’t have any meaning.
- Someone may become passive or “blank.”
- Trouble initiating activities
Lack of empathy
- A person may not care how their actions are affecting others.
Trouble concentrating or paying attention
- Losing track of the date, time, or year
- Frequently losing things and being unable to find them
- Forgetting names of family members or close friends
Increased dependence on others in activities of daily living
Scientists do not know exactly what causes frontotemporal dementia. The specific changes to the brain may be similar to changes in other brain diseases such as amyotrophic lateral sclerosis (ALS or Lou Gherig’s disease), Alzheimer’s disease, and Parkinson’s disease. There may be a genetic component to some types of frontotemporal dementia.
Symptoms of frontotemporal dementia progress over years. You and your family may start to notice subtle changes in behavior and language skills. For example, a person may mix up words or have difficulty remembering what objects are called. Your family may notice personality changes or unusual behavior that you do not notice.
Caregiving is not usually a one-person job. Try to get help early on—before you think you need it! If your loved one is impulsive, look around your house with a focus on safety. Is there anything they have access to that could be especially dangerous? —Dr. Daly
It is important to take note of these and not brush them off or ignore them. Contact your doctor if you start to notice any symptoms. It is important to have a thorough evaluation for other causes of memory loss or behavior changes.
There is not one single test or biomarker that diagnoses the disease. Your doctor will do a full examination that includes lab tests, cognitive tests, and brain imaging. The most important part of the evaluation is the careful review of symptoms. A brain MRI might show shrinkage of the frontal and temporal lobes, but the brain may also look normal because structural changes often lag behind your symptoms. Your doctor might recommend functional imaging like a PET scan.
There is no cure for frontotemporal dementia. However, treatments can help control symptoms, and make living with the condition easier.
A combination of therapies can help people maintain as much independence as possible.
- Physical therapy helps improve strength and balance, and exercise has also been shown to help with brain function and memory.
- Occupational therapy can help adapt and manage activities that now may seem difficult, such as toileting, feeding, and dressing.
- Speech therapy can help people adapt to problems with communication and swallowing.
- Nutritional therapy can help with weight gain that is caused by compulsive overeating, or with weight loss that can occur later in the illness.
Different medications can help reduce symptoms. Any medication has to be used with caution with careful attention to the possible side effects. Each person needs a personalized approach to medications based on their symptoms, their goals, and their other medical problems.
- Antipsychotic medications can help with behavior problems.
- Antidepressants can help control depression, anxiety, compulsions, and other mood symptoms.
- Stimulants may help with apathy.
It is also important to focus on the things you can control to improve your quality of life. Review your lifestyle for any factors that you can improve.
- Get enough sleep. Consistently getting a solid 8 or 9 hours of sleep can improve your memory and concentration.
- Write things down. This is a great way to stimulate your brain and keep details in your memory.
- Set reminders. A pop-up reminder on your phone or computer is a quick way to make sure you don’t forget things.
- Make a schedule or create lists that outline tasks you need to accomplish.
- Organize your finances. People with frontotemporal dementia can make impulsive decisions. Have systems in place to prevent financial stress.
- Review your advance care planning. It is very important to do advance care planning in the earliest stages of illness. Choose a trusted person to make medical decisions for you if you become unable to do so yourself. Talk to them about your goals and what is important to you. Talk to your health care provider about what situations are common in your disease so you can plan for them.
If you are a caregiver for someone with frontotemporal dementia:
- Research local resources for support. It is much easier to evaluate resources before you need them.
- Ask family and friends for help with your own child care, errands, and other tasks.
- Try to set aside time for activities that you enjoy and aren't connected to the demands of caregiving.
- Join a support group for frontotemporal disorders.
- Review your family member’s advance care planning. Talk to their health care provider about possible future situations so that you can plan ahead.
Frontotemporal dementia is a chronic condition and, once diagnosed, will require long-term follow-up. Follow up regularly with your doctor so they can adjust your treatment as the disease progresses.
The behavior problems from frontotemporal dementia can be extremely challenging. Support groups are a valuable way to find practical information and local resources. There is an active support community of caregivers online. —Dr. Daly
Dr. Gambrah-Lyles is a resident pediatrician at the Children's Hospital of Philadelphia. She is a graduate of the University of Pennsylvania Perelman School of Medicine (2019). She graduated cum laude and received her undergraduate degree in Biochemistry and Spanish from Washington University in St. Louis (2013). Her research explores the intersections between neurology, public health, and infectious disease. She has investigated nutrition and cerebral palsy in Botswana, and completed a year-long project in Brazil, researching growth and developmental outcomes of Zika virus infection in pediatric patients as a Doris Duke International Scholar. Dr. Gambrah-Lyles speaks four languages, loves staying active, and enjoys sharing her love for medicine through teaching and writing.