Frontotemporal dementia (FTD) is a group of dementias that mainly affect personality and behavior, language and speech, or movement. FTD takes longer to affect memory than Alzheimer’s disease and other dementias. According to The Association for Frontotemporal Degeneration, frontotemporal dementia is the most common type of dementia for individuals under 60 years of age. It is estimated that between 50,000 and 60,000 Americans have this type of dementia.
Nerve cell damage in the frontal and temporal lobes of the brain is the cause. (The frontal lobes are behind your forehead and the temporal lobes are behind your ears). As brain cells are damaged and die, the lobes shrink. A person with FTD often becomes erratic, showing bad judgement and acting inappropriate in public.
FTD is progressive, meaning that over time the symptoms worsen.
Frontotemporal dementias include the following types, each with distinct early symptoms:
– Behavioral Variant Frontotemporal Dementia (bvFTD): problems with behavior, personality, judgment, and emotions
– Primary Progressive Aphasia (PPA): problems speaking
– Semantic Variant PPA (svPPA): problems understanding language
– Corticobasal Syndrome (CBS): problems with movement
Unlike most other forms of dementia, memory is not affected in people with frontotemporal dementia until later in the disease. FTD mainly hurts different parts of the brain (the frontal and temporal lobes) than are affected by other forms of dementia, including the much more common Alzheimer’s disease. Also, this form of dementia strikes people at a relatively younger age — usually between the ages of 45 and 65. However, FTD can affect individuals both younger and older than this range. Alzheimer’s usually affects people who are older than 65.
Causes and risk factors of frontotemporal dementia are somewhat different from other forms of dementia. While the exact cause of the damage is unknown, the onset of FTD seems to occur as a result of mutations concerning the gene MAPT and the tau proteins it helps produce. These abnormal proteins in the brain can form Pick bodies, named after Dr. Arnold Pick, who first identified them. (Frontotemporal dementia used to be called “Pick’s disease.”) Tau proteins and Pick bodies disrupt brain cell function in similar ways to the plaques and tangles found in Alzheimer’s disease and the Lewy bodies found in Lewy body dementia, though in different parts of the brain that are centers for thought, speech, and behavior.
Approximately half of all individuals with frontotemporal dementia have some family history of FTD or another dementia. Frontotemporal dementia affects men and women about equally.
As with causes, symptoms of FTD are also somewhat different from other forms of dementia. The main symptoms of frontotemporal dementia are changes in personality, loss of the ability to express and understand language, and difficulty with movement. Unlike Alzheimer’s disease and Lewy body dementia, FTD does not generally affect an individual’s memory until the more advanced stage.
– encroaching on others’ personal space
– inappropriate sexual behavior
Social skills like tact and empathy may be lost. They may lose interest in everything, or suddenly need to be active all the time. They often lose the ability to make informed and safe decisions about tasks, such as managing finances or driving. When the behavioral problems are the most obvious, this form of dementia may look a little like depression, schizophrenia, or bipolar disorder. Not all people with FTD will show all of these symptoms.
This disease also affects the way in which an individual is able to use and understand language. FTD is also called “semantic dementia” and “primary progressive aphasia.” These names refer to a set of symptoms that affect language in frontotemporal dementia:
Semantic dementia: Semantic dementia refers to the disease’s effect on the temporal lobes of both sides of the brain. This region of the brain controls how we understand and recognize words and their meaning. A person with this symptom of FTD would have trouble communicating, both using words correctly and understanding what is being said. Difficulty with reading and spelling is also seen with semantic dementia.
Primary progressive aphasia: PPA refers to the disease’s effect on the left side of the brain. This region of the brain controls how we put words together and express meaning. Individuals may have trouble finding and using the right words to explain themselves, and they may have trouble forming a structured sentence.
Muscle weakness and issues with coordination can cause these symptoms:
– shaky limbs
– trouble walking
Movement problems can become so severe that the individual with the disease may require a wheelchair or be bedridden. Other issues might include difficulty chewing, swallowing, and incontinence (lack of ability to control urination and/or defecation). Note: Some of these symptoms are similar to that of Parkinson’s disease dementia.
While there currently are no treatments specifically for FTD, approaches to diagnosis and treatment of frontotemporal dementia are similar to other forms of dementia. Follow the links below to learn more:
How Long Can Someone Live With FTD?
A person with frontotemporal dementia usually lives between six to eight years after diagnosis, though some will hold on longer. The cause of death is not the illness itself, but complications from its symptoms. The inability to swallow correctly may result in food or liquid getting into the lungs, causing an infection that turns into aspiration pneumonia. Injuries from falling, due to balance problems, might also kill someone in the late stages of FTD.
Frontotemporal dementia can be especially difficult for caregivers to deal with because, unlike other forms of dementia, it can affect younger individuals who are still working or who have children in the home. This disease affects decision making early on, so it is important to begin making financial and legal decisions soon after the disease starts. In addition to setting up a durable power of attorney, caregivers should also consider having a driving evaluation for their loved ones before driving becomes a problem.
Care partners should encourage their loved ones to participate in support groups for frontotemporal dementia, whether online or in person. These can be an important way to deal with a disease that others often do not understand.
For other recommendations on caregiving, click here.
Because the disease is progressive and symptoms can become so difficult to manage, there will probably come a time when a caregiver can’t fully meet the needs of someone with frontotemporal dementia. Residential care, in a nursing home or assisted living community, is usually the best option. Assisted living residences with memory care (also sometimes called “Alzheimer’s care,” though residents can have other dementias besides Alzheimer’s) have staff who are specifically trained to care for and communicate with people who have dementia.
For much more on how to find a compatible assisted living home, click here. If your loved one has FTD, you’ll want to discuss the disease with management and staff at any community you’re considering. Make sure they understand the particular needs and how they’re different from Alzheimer’s. Because a health screening and the development of a care service plan is part of moving into assisted living, they should be fully prepared to keep your love one safe and happy there, despite the illness.