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Spotlight: Frontotemporal Dementia

(Image: "Unraveling Bolero" by Anne Adams)

Frontotemporal dementia (FTD) is one of the types of dementia that people are generally less familiar with, though it is the most common form of dementia that is diagnosed in people ages 40-65.

The term "frontotemporal dementia" itself encompasses several different diseases caused by degeneration of the frontal and/or temporal lobes of the brain. Some of the diseases under this umbrella include frontotemporal degeneration, frontotemporal lobar degeneration, or Pick's disease, among several others.

What Are the Symptoms of FTD?

Signs and symptoms can vary widely from person to person, based on what parts of the brain are affected. It is often misdiagnosed as Alzheimer's disease (the most common form of dementia) or as a psychiatric problem.

Because it can look so different in different people, getting an accurate diagnosis is a challenge. On average, it takes more than three and a half years to get to the diagnosis of frontotemporal dementia, which can cause a lot of frustration and anxiety.

Symptoms have been gathered into clusters that tend to happen together. One person may have symptoms from more than one cluster. Symptoms worsen over time, typically over a span of years. Note that problems with memory are not a common early symptom, tending to happen later in the disease.

Behavioral changes

The most common signs and symptoms of frontotemporal dementia involve extreme changes in behavior and personality. These can include:

  • Increasingly inappropriate actions

  • Loss of empathy and other interpersonal skills

  • Lack of judgment and inhibition

  • Loss of interest and excitement

  • Repetitive compulsive behavior

  • Neglect of personal hygiene

  • Changes in eating habits, especially overeating

  • Consumption of inedible objects

  • Lack of awareness of changes in thinking or behavior

Speech and language problems

Some subtypes of frontotemporal dementia have significant impairment in speech and trouble using and understanding language, both written and spoken. Symptoms in this cluster include:

  • Difficulty naming objects

  • Replacing a specific word with a general one ("it" instead of "pen")

  • Loss of knowledge of word meaning

  • Nonfluent and hesitant speech

  • Telegraphic speech (often using single words instead of sentences)

  • Misuse of pronouns

  • Errors in sentence construction

  • Loss of reading and writing ability

Movement disorders

Rarer subtypes of frontotemporal dementia are characterized by problems with movement, similar to those associated with Parkinson's disease or amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). Symptoms may include:

  • Tremor

  • Rigidity

  • Muscle spasms

  • Poor coordination

  • Difficulty swallowing

  • Muscle weakness

Key Differences Between FTD and Alzheimer's Disease

  • Age at diagnosis may be an important clue. Most people with FTD are diagnosed in their 40s and early 60s. Alzheimer's, on the other hand, grows more common with increasing age.

  • Memory loss tends to be a more prominent symptom in early Alzheimer's than in early FTD, although advanced FTD often causes memory loss in addition to its more characteristic effects on behavior and language.

  • Behavior changes are often the first noticeable symptoms in the most common form of FTD. Behavior changes are also common as Alzheimer's progresses, but they tend to occur later in the disease.

  • Problems with spatial orientation — for example, getting lost in familiar places — are more common in Alzheimer's than in FTD.

  • Problems with speech. Although people with Alzheimer's may have trouble thinking of the right word or remembering names, they tend to have less difficulty making sense when they speak, understanding the speech of others, or reading than those with FTD.

  • Hallucinations and delusions are relatively common as Alzheimer's progresses, but relatively uncommon in FTD.

Source: Alzheimer's Association

For one unusual portrait of how frontotemporal dementia can present, listen to this episode of the podcast, Radiolab, "Unraveling Bolero.”

How is FTD diagnosed?

Frontotemporal dementia can't be diagnosed with a single test. Instead, other conditions or diseases that cause similar symptoms have to be ruled out.

Some of the tests used to diagnose frontotemporal dementia include:

  • blood tests: to identify other possible causes of symptoms

  • neuropsychological testing: to check your judgment, memory, language, and other thinking skills, which help narrow down what type of dementia is present

  • brain imaging like an MRI or CT scan: to check for tumors, blood clots, degeneration, or any other changes in your brain

What Are the Causes & Risk Factors?

The causes of frontotemporal dementia are unknown. In some cases there are specific proteins that accumulate in the brain, but it is unknown why this occurs or how to prevent it.

There is only one known risk factor: genetics. Several genes have been found to be related to the disease, so if you have a relative with FTD, you have a greater risk. But not everyone with a family history will develop the disease. And in about half of the cases, there is no family history.

Getting Help for FTD

Frontotemporal dementia currently doesn't have a cure, so treatment is focused on managing and alleviating symptoms.

Keeping the person's environment comfortable and familiar goes a long way in managing behavioral issues. People with dementia are better able to cope when they are in a familiar place with familiar people. It can help them stay calm to keep them away from crowds or very noisy places, managing stimulation so it doesn't get overwhelming.

Antidepressant and antipsychotic medications can also be used to help manage behavioral problems.

Speech therapy can help with language difficulties. Environment matters with communication problems as well. A quiet, calm environment is easier to communicate in. It can help to keep communication tools on hand, like paper and pen, wherever they go.

If you’ve been diagnosed with frontotemporal dementia or are caring for someone who has, support groups or individual counseling can be helpful. Learning to cope with life with frontotemporal dementia can be challenging, but help is available.

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