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Frontotemporal Dementia

Alzheimer’s disease (AD) may be the most common and well-known form of dementia. But other disorders also affect brain function.

Frontotemporal dementia (FTD)–the fourth most common cause of dementia–is a group of disorders that occur when the nerve cells in the frontal and temporal lobes of the brain are damaged, causing the lobes to shrink. FTD can affect a person’s behavior, personality, language, and movement.

Facts about FTD

About 250,000 Americans have FTD. These diseases are among the most common dementias that strike at younger ages. Symptoms typically start between the ages of 40 and 65, but FTD can strike young adults and those who are older. FTD affects men and women equally.

The cause of FTD is unknown. Researchers have linked certain subtypes of FTD to mutations on several genes. Some people with FTD have tiny structures–called Pick bodies–in their brain cells. Pick bodies contain an abnormal amount or type of protein.

A family history of FTD is the only known risk for these diseases. Although experts believe that some cases of FTD are inherited, the majority of people with FTD have no family history of it or other types of dementia.

Types of FTD

The most common types of FTD are:

  • Frontal variant. This form of FTD affects a person’s behavior and personality.

  • Primary progressive aphasia. This form has two subtypes:

    • Progressive nonfluent aphasia, which affects a person’s ability to speak. 

    • Semantic dementia, which affects a person’s ability to use and understand language.  

A less common form of FTD affects a person’s movement, causing symptoms similar to Parkinson’s disease or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Symptoms

Symptoms of FTD start gradually and progress steadily, and in some cases, rapidly. They vary from person to person, depending on the areas of the brain involved. These are common symptoms:

  • Behavior and/or dramatic personality changes, such as swearing, stealing, increased interest in sex, or a deterioration in personal hygiene habits

  • Socially inappropriate, impulsive, or repetitive behaviors

  • Impaired judgment

  • Apathy

  • Lack of empathy

  • Decreased self awareness

  • Loss of interest in normal daily activities

  • Emotional withdrawal from others

  • Loss of energy and motivation

  • Inability to use or understand language; this may include difficulty naming objects, expressing words, or understanding the meanings of words

  • Hesitation when speaking

  • Less frequent speech

  • Distractibility

  • Difficulty planning and organizing

  • Frequent mood changes

  • Agitation

  • Increasing dependence

Some people have physical or psychiatric symptoms, such as tremors, muscle spasms or weakness, rigidity, poor coordination and/or balance, difficulty swallowing, hallucinations, or delusions. These signs are not as common as behavioral and language changes.

Complications

FTD is not life-threatening. A person may live with FTD for years. Pneumonia is the most common cause of death in those who have FTD. They also are at increased risk for infections and fall-related injuries.  

As FTD progressively worsens, a person may engage in dangerous behaviors or be unable to care for himself or herself. A person with FTD may need 24-hour nursing care or to stay in an assisted living facility or nursing home.

Diagnosis

Family members are often the first to notice subtle changes in a person’s behavior or language skills. It’s important for a person to see a doctor as early as possible to discuss:

  • Symptoms, including which symptoms, when they began, and how often they occur

  • Medical history and previous medical problems

  • Medical histories of family members

  • Prescription medications, over-the-counter medicines, and dietary supplements taken

No single test can diagnose FTD. Typically, doctors will order routine blood tests and perform physical exams to rule out other conditions that cause similar symptoms. If they suspect dementia, they may:

  • Evaluate the person’s neurological health--reflexes, muscle strength, muscle tone, sense of touch and sight, coordination, and balance

  • Assess the person’s neuropsychological status--memory, problem-solving ability, attention span and counting skills--and language abilities

  • Order magnetic resonance imaging or computed tomography scans of the brain

Treatment

Currently, no treatments are available to cure or slow the progression of FTD. Doctors may prescribe medications to treat symptoms. Antidepressant medications may help treat anxiety and control obsessive-compulsive behaviors and other symptoms. Prescription sleeping medications can help ease insomnia and other sleep disturbances. Antipsychotic medications may reduce irrational and compulsive behaviors.  

Behavior modification may help control unacceptable or risky behaviors.

Speech and language pathologists and physical and occupational therapists can help a person adjust to some of the changes caused by FTD.

Living with or managing FTD

Coping with FTD can be frightening, frustrating, and embarrassing for both the person with the disease and family members. Since some symptoms can’t be controlled, family members shouldn't take their loved one’s behaviors personally. Families need to maintain their own well-being while ensuring that their loved one is treated with dignity and respect.

Caregivers should learn all they can about FTD and assemble a team of experts to help the family meet the medical, financial, and emotional challenges they are facing.

It’s important to find a doctor knowledgeable about FTD. Other health care specialists who may play a role on the team are home-care nurses, neuropsychologists, genetic counselors, and speech and language, physical, and occupational therapists. Social workers can help patients and caregivers find community resources, such as medical supplies and equipment, nursing care, support groups, respite care, and financial assistance.

Attorney and financial advisors can help families prepare for the later stages of the disease.

Advanced planning will help smooth future transitions for the person and family members and may allow the person to participate in the decision-making process.

Home remedies

Little solid evidence exists that antioxidants and other supplements help people with FTD. There has been some controversy over the use of high doses of vitamin E to help slow the progression of AD. Based on modest success with AD, some doctors may recommend that patients with FTD take 1,000 IUs of vitamin E twice a day.

A person with FTD and family members should talk with his or her doctor about whether to take antioxidants and other supplements, such as coenzyme Q10, vitamin C, and B vitamins to support brain health.