Frontotemporal Disorders: Information for Patients, Families, and Caregivers
Treatment and Management
So far, there is no cure for frontotemporal disorders and no way to slow down or prevent them. However, there are ways to manage symptoms. A team of specialists—doctors, nurses, and speech, physical, and occupational therapists—familiar with these disorders can help guide treatment.
The behaviors of a person with bvFTD can upset and frustrate family members and other caregivers. It is natural to grieve for the “lost person,” but it is also important to learn how to best live with the person he or she has become. Understanding changes in personality and behavior and knowing how to respond can reduce caregivers’ frustration and help them cope with the challenges of caring for a person with a frontotemporal disorder.
Changing the schedule
Matthew, 53, diagnosed with bvFTD, insisted on playing the card game solitaire on the computer for hours every morning. He did not care that this activity interfered with his wife’s schedule. His wife figured out how to rearrange her day to stay home in the morning and take Matthew on errands and appointments in the afternoon. A portable device for solitaire in the car helped distract him.
Managing behavioral symptoms can involve several approaches. To ensure the safety of a person and his or her family, caregivers may have to take on new responsibilities or arrange care that was not needed before. For example, they may have to drive the person to appointments and errands, care for young children, or arrange for help at home.
It is helpful, though often difficult, to accept rather than challenge people with behavioral symptoms. Arguing or reasoning with them will not help because they cannot control their behaviors or even see that they are unusual or upsetting to others. Instead, be as sensitive as possible and understand that it’s the illness “talking.” Frustrated caregivers can take a “timeout”—take deep breaths, count to 10, or leave the room for a few minutes.
To deal with apathy, limit choices and offer specific choices. Open-ended questions (“What would you like to do today?”) are more difficult to answer than specific ones (“Do you want to go to the movies or the shopping center today?”).
Maintaining the person’s schedule and modifying the environment can also help. A regular schedule is less confusing and can help people sleep better. If compulsive eating is an issue, caregivers may have to supervise eating, limit food choices, lock food cabinets and the refrigerator, and distract the person with other activities. To deal with other compulsive behaviors, caregivers may have to change schedules or offer new activities.
Medications are available to treat certain behavioral symptoms. Antidepressants called selective serotonin reuptake inhibitors are commonly prescribed to treat social disinhibition and impulsive behavior. Patients with aggression or delusions sometimes take low doses of antipsychotic medications. The use of Alzheimer’s disease medications to improve behavioral and cognitive symptoms in people with bvFTD and related disorders is being studied, though results so far have been mixed, with some medications making symptoms worse. If a particular medication is not working, a doctor may try another. Always consult a doctor before changing, adding, or stopping a drug.
Treating Language Problems
Treatment of primary progressive aphasia (PPA) has two goals—maintaining language skills and using new tools and other ways to communicate. Treatment tailored to a person’s specific language problem and stage of PPA generally works best. Since language ability declines over time, different strategies may be needed as the illness progresses.
To communicate without talking, a person with PPA may use a communication notebook (an album of photos labeled with names of people and objects), gestures, and drawings. Some people find it helpful to use or point to lists of words or phrases stored in a computer or personal digital assistant.
Finding a new way to communicate
Mary Ann, a television news anchor for 20 years, began having trouble reading the nightly news. At first, her doctor thought she had a vision problem, but tests showed that her eyesight was normal. Although normally creative and energetic, Mary Ann, 52, had trouble finishing assignments and voicing her ideas at staff meetings. In time, she was let go from her job. Mary Ann applied for Social Security disability benefits, which required a medical exam. Her symptoms puzzled several doctors until a neurologist diagnosed logopenic PPA. A speech therapist taught Mary Ann to use a personal digital assistant to express words and phrases. For emergencies, Mary Ann carries a card in her wallet that explains her condition.
Caregivers can also learn new ways of talking to someone with PPA. For example, they can speak slowly and clearly, use simple sentences, wait for responses, and ask for clarification if they don’t understand something.
A speech-language pathologist who knows about PPA can test a person’s language skills and determine the best tools and strategies to use. Note that many speech-language pathologists are trained to treat aphasia caused by stroke, which requires different strategies from those used with PPA. (See the Resources section to find speech-language pathologists and other experts who know about frontotemporal disorders.)
Managing Movement Problems
No treatment can slow down or stop frontotemporal-related movement disorders, though medications and physical and occupational therapy may provide modest relief.
For people with corticobasal syndrome (CBS), movement difficulties are sometimes treated with medications for Parkinson’s disease. But these medicines offer only minimal or temporary improvement. Physical and occupational therapy may help people with CBS move more easily. Speech therapy may help them manage language symptoms.
For people with progressive supranuclear palsy (PSP), sometimes Parkinson’s disease drugs provide temporary relief for slowness, stiffness, and balance problems. Exercises can keep the joints limber, and weighted walking aids—such as a walker with sandbags over the lower front rung—can help maintain balance. Speech, vision, and swallowing difficulties usually do not respond to any drug treatment. Antidepressants have shown modest success. For people with abnormal eye movements, bifocals or special glasses called prisms are sometimes prescribed.
People with FTD-ALS typically decline quickly over the course of 2 to 3 years. During this time, physical therapy can help treat muscle symptoms, and a walker or wheelchair may be useful. Speech therapy may help a person speak more clearly at first. Later on, other ways of communicating, such as a speech synthesizer, can be used. The ALS symptoms of the disorder ultimately make it impossible to stand, walk, eat, and breathe on one’s own.
For any movement disorder caused by FTLD, a team of experts can help patients and their families address difficult medical and caregiving issues. Physicians, nurses, social workers, and physical, occupational, and speech therapists who are familiar with frontotemporal disorders can ensure that people with movement disorders get appropriate medical treatment and that their caregivers can help them live as well as possible.
The Future of Treatment
Researchers are continuing to explore the genetic and biological actions in the body that lead to frontotemporal disorders. In particular, they seek more information about genetic mutations that cause FTLD, as well as the disorders' natural history and disease pathways. They also want to develop better ways, such as specialized brain imaging, to track its progression, so that treatments, when they become available, can be directed to the right people. The ultimate goal is to identify possible new drugs and other treatments to test.
Researchers are also looking for better treatments for frontotemporal disorders. Possible therapies that target the abnormal proteins found in the brain are being tested in the laboratory and in animals. Clinical trials and studies are testing a number of possible treatments in humans.
Clinical trials for individuals with frontotemporal disorders will require many participants. People with frontotemporal disorders and healthy people may be able to take part. To find out more about clinical trials, talk to your healthcare provider or visit www.clinicaltrials.gov.
Publication Date: June 2014
Page Last Updated: May 21, 2014