Frontotemporal Dementia (FTD) is a disease process characterized by progressive atrophy of several different areas of the brain, particularly the frontal and/or temporal lobes. These areas control executive functions such as decision-making, personality, social behavior and language. FTD affects an estimated 50,000 to 60,000 Americans and about 40% of people with FTD have a family history of the disease.

FTD is distinct from other forms of dementia in two important ways: 1) Onset of FTD often occurs in a person’s 50s and 60s, with the average age of diagnosis at 60. This is a full 10 years before the average Alzheimer’s patient is diagnosed; 2) The hallmark of FTD is gradual, progressive decline in behavior and/or language (with memory usually relatively preserved). As the disease progresses, these deficits cause significant impairment in social and/or occupational functioning and result in an increasing dependency on caregivers.

Signs and symptoms vary, depending on which part of the brain is affected. The most common signs of FTD involve extreme changes in behavior and personality including increasingly inappropriate social behavior; loss of empathy and other interpersonal skills; lack of judgment; loss of inhibition; lack of interest; repetitive compulsive behavior; a decline in personal hygiene; sleep issues; and changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates.

Managing behavioral symptoms can involve several approaches:

Trying to accept rather than challenge your loved one. Arguing or reasoning will not help because persons with FTD are unable to control their behaviors or see that they are unusual or upsetting others.
Taking a “timeout” when frustrated. Take deep breaths, count to 10 or leave the room for a few minutes.
Limiting choices and offering specific choices when dealing with apathy. Open-ended questions, such as “what do you want to do today?” are more difficult to answer.
Maintaining a regular schedule, reducing distractions and modifying the environment to reduce confusion and improve your loved one’s sleep.
Limiting food choices and/or distracting your loved one with other activities if compulsive eating is an issue.

FTD can also cause speech and language problems such as difficulty in using and understanding written and spoken language and trouble naming things. Some patients use speech therapy to help with language skills and a speech therapist can also help find other ways for the patient to communicate. Speaking slowly and clearly, using simple sentences and waiting for a response is another strategy.

Rarer types of FTD can result in motor-related problems that include tremors, rigidity, muscle spasms or twitches, difficulty swallowing and falls or walking problems. Medications and physical and occupational therapy may provide relief for movement symptoms.

Coping with FTD can be frightening, frustrating and embarrassing for the patient and family members. Since some symptoms cannot be controlled, family members should not take their loved one’s behaviors personally.

If you suspect your loved one has FTD, getting an accurate diagnosis is crucial as some medications used to treat other disorders may be harmful in a person with FTD. While there is no cure, coordinating your loved one’s care with their team of health professionals is essential to managing medical and day-to-day care as well as changing family and social relationships, stress and other concerns including your own self-care.

Editorial by Patricia Riley, board member of Alzheimers Coachella Valley, a community resource for dementia support and education. For more information, call (760) 776.3100 or visit www.cvalzheimers.org.