Frontotemporal dementia has come into the spotlight

March 28, 2024 Providence Stroke & Cognitive Care Center


In this article:

  • Primary progressive aphasia is a communication disorder that often accompanies frontotemporal dementia (FTD).

  • Though researchers don’t know exactly what causes FTD, a small percentage of cases are genetic.

  • One of the biggest differences between FTD and Alzheimer’s is that FTD more often occurs in middle-aged people.

Over the past couple of years, two major celebrities — actor Bruce Willis and talk show host Wendy Williams — have been diagnosed with primary progressive aphasia and frontotemporal dementia. Both disorders can be devastating for people who have made a career out of communicating with others.

What is frontotemporal dementia?

Frontotemporal dementia (FTD) is a group of disorders caused by the progressive degeneration of the frontal and temporal lobes of the brain, which play a significant role in decision-making, behavioral control and language. Some people with FTD — including Willis and Wiliams — develop primary progressive aphasia, which makes it difficult for them to communicate.

“Most cases of primary progressive aphasia are sporadic,” says Nancy Isenberg, M.D., a neurologist and the medical director of the Providence Swedish Center for Aging in Seattle, Washington. “But around 10% to 20% of cases of frontotemporal dementia are genetic," Dr. Isenberg explains in a recent podcast episode. "So, if you have a strong family history of early onset dementia, then you may want to see a genetic counselor.”

FTD typically occurs at a younger age than other forms of dementia. According to the National Institute on Aging, about 60% of people diagnosed with FTD are between the ages of 45 to 64.

Signs and symptoms of FTD

While signs of FTD can vary widely among patients and tend to progress over time as different parts of the brain are affected, all are marked by a steady decline in the person’s ability to think and function. Some common symptoms of FTD include:

  • Changes in personality.
  • Lack of sympathy for other people’s conditions.
  • Reduced interest in doing things.
  • Ritualistic behavior (repetitive and compulsive movements).
  • Change in eating habits.
  • Movement problems (weakened or stiff muscles, slow reflexes or even muscle spasms).
  • Speech and language problems (difficulties reading, writing or expressing themselves).

“Unfortunately, these patients are often misdiagnosed with other psychiatric conditions, especially those who have a marked personality or behavior change,” says Dr. Isenberg. “And these delays and diagnoses can result in significant financial and social consequences. So, if you have a family member who you think has a big change in personality or language issues, then I would strongly encourage them to seek an evaluation with a cognitive neurologist.”

“With FTD,” Dr. Isenberg continued, “early connection with partner support, advanced care planning and legal and financial planning are so key. In some cases, speech therapy may be helpful in slowing primary progressive aphasia.”

Differences between FTD and Alzheimer’s

In some situations, FTD is misdiagnosed as Alzheimer’s disease, another form of dementia. Some of the main differences between the two different types of dementia include:

  • FTD is more likely to be diagnosed in people who are in their 40s, 50s or early 60s, while Alzheimer’s is more common in older people.
  • People with Alzheimer’s tend to have less difficulty when they speak than those with FTD.
  • People with Alzheimer’s are more likely to get lost in familiar places than those with FTD.
  • While advanced FTD can lead to memory loss, it’s a more prominent symptom in people with Alzheimer’s.

Can frontotemporal dementia be treated?

Unfortunately, there is still no cure for FTD and no way to prevent it, says Dr. Isenberg. But there are ways to help people who have FTD still live a meaningful life.

“It really takes a village, so get support and education early on,” she says. “At Providence, we have a team-based approach. We have a social worker, a neuropsychologist, cognitive specialists and psychiatrists who can offer help for our patients. They can perform diagnostic tests to make sure there is nothing else contributing to the condition.”

“There are also a number of associations, such as the Association for Frontotemporal Dementia, the National Aphasia Association, and the National Visual Association, which are great resources in addition to the Alzheimer’s Association,” Dr. Isenberg added.

If you suspect you may have some signs or symptoms of FTD or cognitive decline, don’t wait – make an appointment with your primary care provider who can connect you with one of our Providence Neuroscience Institute specialists. You can take comfort in knowing your care team at Providence is experienced in treating and managing cognitive diseases like FTD, Alzheimer’s disease and dementia.

Contributing caregiver

Nancy Isenberg, M.D., is a neurologist and the medical director of the Providence Swedish Center for Aging in Seattle, Washington.

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Related resources

Talk with a Doc: Aphasia and frontotemporal dementia

How Alzheimer’s disease changes the brain

Memory loss could be a sign of dementia

This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.

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