Frontotemporal dementia is one of many types of dementia that affect memory and personality. The term frontotemporal dementia, or FTD, represents a group of neurodegeneration disorders that impact the frontal and temporal lobes of the brain.
While frontotemporal dementia was once thought to be a very rare disease, researchers now estimate that it makes up between 10 to 15 percent of all dementia cases, according to the Alzheimer’s Association. Since frontotemporal dementia could affect a larger number of individuals than previously thought, it’s important for adults and their family members to understand the disease, its symptoms and care options.
What Is Frontotemporal Dementia?
Frontotemporal dementia is not a single disease. Instead, FTD describes a group of disorders that impact the brain. The various forms of FTD are typically placed into two basic groups.
Behavioral- and Personality-Based FTD: With these forms of FTD, individuals experience uncharacteristic impulsiveness. They may be tactless or show an unusual lack of inhibition. Many times, they make poor judgment calls, such as making bad financial decisions. Some individuals act out in public or seem to be curt or rude to the people around them. Generally speaking, these are actions that they would not have taken years before. Other symptoms may include:
- A drop in hygiene levels and physical care activities
- Weight gain
- Impulsive eating
- Lack of restrictions, sometimes leading to illegal actions
- Lack of understanding or awareness of their symptoms
Progressive Disruption of Expression: With this type of FTD, a person will have trouble expressing themselves both verbally and through writing. Their difficulty with expression will increase over time. In some situations, this is diagnosed as primary progressive aphasia. Some key changes may include:
- Difficulty understanding the meaning of words
- Difficulty with naming
- Trouble with speaking specific words
Outside of trouble with expression, other cognitive functions of individuals of this seem normal. Even memory, one of the most common signs of dementia, may seem normal.
Who Is at Risk of Frontotemporal Dementia?
FTD can occur in anyone. It is most common in those in middle age up to age 75, with diagnosis occurring less commonly after this point. However, FTD is a form of dementia that strikes earlier than is typical. Individuals as young as 35 have been known to get FTD. Because of the early age at which FTD can occur, it is common for doctors to misdiagnose the condition as a psychiatric condition instead of recognizing the disease as dementia.
What Are the Symptoms of Frontotemporal Dementia?
The symptoms of frontotemporal dementia range widely from one group to the next. However, the key to spotting this condition is to look for significant personality and expression changes that seem out of character. Symptoms will get worse over time, although the change can span years, making it more difficult to identify FTD than other types of dementia.
The most common behavioral changes in men and women with frontotemporal dementia include:
- Loss of empathy or other changes in impersonal skills
- Lack of sensitivity to others’ feelings
- Inappropriate social behavior
- Lack of interest in daily activities, sometimes mistaken as depression
- Compulsive, repetitive movements, such as smacking lips, clapping hands or tapping feet
- Eating inedible objects
- Need to put things in their mouth
- Changes in eating such as overeating or a significant change in what’s eaten (sugary food addictions are common)
- Lack of inhibitions, sometimes with illegal consequences
It is also common to see changes in a person based on how he or she speaks or communicates, especially if they have a form of FTD that’s rooted in changes in expression. In this case, some key signs of frontotemporal dementia may include:
- Difficulty using spoken language
- Trouble finding a word (often a common word)
- Trouble naming objects, which may result in the person calling an object “it”
- No longer understanding the meaning of a specific word
- Sentence construction mistakes
- Speech that seems slowed
Some people also have movement disorder symptoms including:
- Difficulty with swallowing food or water
- Significant muscle weakness
- Muscle spasms
- Trouble with coordination
- Laughing or crying at inappropriate times
Stages of Frontotemporal Dementia
FTD often begins with mild symptoms that expand or worsen over time, generally over a span of several years. Each person may develop the signs of frontotemporal dementia and progress at different rates, but most will go through three general stages.
Early-Stage Frontotemporal Dementia: Individuals may begin to have judgment difficulties with money or exhibit actions that are unusual for their personality. Impulsive behavior will become more apparent and common, and many individuals will become more careless. During this early phase, those with language-based difficulties may begin forgetting names of people or places, have difficulty with remembering what something is called or call things by the wrong name. Some also have trouble with depression, sleep and emotional health.
Mid-Stage Frontotemporal Dementia: Mid-stage FTD includes the same symptoms as early-stage FTD, although they often become more common or severe. Some people will also begin to struggle with daily tasks due to communication problems. They may develop more significant language difficulties that make communicating their needs problematic. Additionally, as the mind begins to fail, it is also likely that simple tasks, such as bathing and grooming, become more challenging. Many individuals need support at this stage, if not earlier in the disease’s progression.
Late-Stage Frontotemporal Dementia: As FTD progresses, it is likely for a person to have more severe symptoms to the point of being unable to express themselves through written or spoken word. Sometimes, individuals can become very aggressive, detached and withdrawn or more judgmental to those around them. Because of the breakdown of their communication skills and inhibitions, as well as their declining ability to function in everyday situations, most people with late-stage frontotemporal dementia need full-time care.
Progression of Frontotemporal Dementia
There is no way to know how long frontotemporal dementia will take to progress, although it’s common for the early stages of the disease to last longer than the later stages. Some people may live for three to four years with minor symptoms. Mid-stage FTD often progresses faster, with the end-stage tending to be the shortest period for this condition. However, it’s also possible for FTD to have a rapid onset and progression, though those situations are less common.
What Are the Causes of Frontotemporal Dementia?
Like many other forms of dementia, the causes of this frontotemporal dementia are not well understood. What researchers know is that frontotemporal dementia causes changes to both the frontal and the temporal lobes of the brain. Most commonly, these areas begin to shrink and substances accumulate in the brain, leading to the symptoms described earlier.
Some research indicates that genetics could be a key factor in the development of frontotemporal dementia. About half of those diagnosed with FTD have a family member that has had it. However, the other half of those diagnosed have no evidence of a genetic link to the disease, making it hard to definitely connect FTD to hereditary factors.
There is also some evidence that links amyotrophic lateral sclerosis (commonly known as ALS) to frontotemporal dementia. Though there is more information necessary to clearly understand what the link is, doctors recognize that those who have ALS may be at a higher risk of developing frontotemporal dementia.
What Are the Risk Factors for Frontotemporal Dementia?
One of the more challenging aspects of frontotemporal dementia is that the risk factors for this condition are not well understood. FTD can affect both men and women and can start anytime between the ages of 35 and 75, creating a very large gap of time in which a person may begin to show signs. Age is not as significant a factor here as it is with other forms of dementia.
The only known risk factor for the development of frontotemporal dementia occurs when a family member has been diagnosed with FTD. This increases the chances of developing it by about 50 percent.
How Is Frontotemporal Dementia Diagnosed?
Unfortunately, there is no single test or process that provides a definitive FTD diagnosis. Instead, frontotemporal dementia symptoms are the primary factor used to identify the condition. Doctors look at the symptoms present and rule out other causes in order to come to a conclusion.
While tests cannot definitely say whether or not an individual has FTD, doctors can use a combination of tests to help evaluate symptoms and eliminate other potential causes. These tests may include:
- Blood tests to look for signs of kidney and liver disease
- Sleep studies to rule out thinking problems and memory concerns related to sleep apnea
- Brain scans, such as MRIs and FDG-PET scans, to look for abnormalities including bleeding, tumors or clots that may have similar symptoms
- Neuropsychological testing to evaluate memory and reasoning skills and changes
In addition, many physicians speak to family members and gather insight from the changes they have noticed. The input of those closest to an individual can help with a frontotemporal dementia diagnosis because relatives and friends are often the best testament to how a person’s personality and abilities have changed over time.
Doctors will also speak to the individual being evaluated but, like many other forms of dementia, FTD symptoms tend to be hard for the person experiencing them to explain. Many times, the individual may not recognize that the changes are occurring at all.
How Is Frontotemporal Dementia Treated?
There is no cure for any type of dementia. Some causes of dementia can be reversed if caught early enough, but the condition itself cannot be slowed or stopped. The goal of most dementia treatments is to manage symptoms, minimize discomfort and to help individuals live a full life.
With frontotemporal dementia, doctors can do this with some medications. Antidepressants, for example, can help reduce the frequency of the behavior-related problems that many people with frontotemporal dementia have. Antidepressant medications used to treat FTD may include trazodone and some selective serotonin reuptake inhibitors such as paroxetine and citalopram.
Antipsychotics may also be used to combat some of the behavioral changes caused by FTD. Medications such as olanzapine and quetiapine may be used in this manner.
In addition to medication, some people benefit from speech therapy. Those with frontotemporal dementia who have speech and communication changes may benefit from learning other methods to communicate, for example.
What Type of Care Does a Person with Frontotemporal Dementia Need?
The level of care that a person with frontotemporal dementia needs depends greatly on their current condition, including what stage of FTD they’re currently dealing with. With most dementia care, it is important to recognize how well a person can continue to take care of himself or herself while living on their own, especially early on in their progression. An individual with early-stage FTD may be able to live in their own home with regular check-ins from friends, family or professional caregivers, for instance.
Anyone living alone with FTD should be supported by their relatives or professionals, however. Caregivers should monitor the individual for signs that their FTD is progressing, paying close attention to any safety issues that come up. Once an individual can no longer care for themselves or inadvertently puts themselves in dangerous situations, such as acting out in public or failing to care for their physical well-being, they likely need full-time care.
Memory care can help at this time. Memory care is specialized support for individuals dealing with memory impairments, including forms of dementia such as FTD and Alzheimer’s disease. Staff in memory care communities are available 24/7 and are trained to provide compassionate support that helps individuals with dementia live full lives in a safe, comfortable environment.
With frontotemporal dementia, memory care provides the encouragement and support a person needs while they struggle with communication and outbursts. They also receive help with personal hygiene, a healthy diet and physical exercise to improve their overall wellness. Therapy programs may also be available in these locations.
For those with frontotemporal dementia, a safe, secure memory care community can help provide a more fulfilling life without the stress FTD puts on individuals and their families. It can also help them gain access to changing support services that meet their needs as the condition progresses over time.