Frontotemporal dementia (FTD) is a subtype of general dementia that severely damages the temporal and frontal lobes of the brain. Mostly affecting adults in their 50s and 60s, FTD is diagnosed in more than 60,000 people in the U.S. annually. Although rare, the onset of frontotemporal dementia may occur in people as young as 45. Only about 10 out of every 1,000 diagnosed cases of FTD involves individuals over 70 years old. Frontotemporal dementia is a progressive disease that can reduce a person’s life expectancy by 10 years from the date of a diagnosis. Full-time dementia care will eventually be needed for people with frontotemporal dementia, as their ability to fully take care of themselves diminishes over time.
What is Frontotemporal Dementia?
A vital part of what makes you “you,” the frontal lobe of the brain controls your ability to memorize, solve problems, express emotions and communicate verbally. Beneath the frontal lobe lies the temporal lobe, where long-term, conscious memories are formed and stored with help from the hippocampus and amygdala. The temporal lobe assists the frontal lobe with producing speech, interpreting what others are saying and memorizing the names of people and objects. In addition, the temporal lobe regulates unconsciousness and automatic physical responses to hunger and thirst.
When the frontal and temporal lobes suffer damage due to frontotemporal dementia, a person’s personality, social behavior and language skills undergo dramatic impairment. Three types of dementia attributed to FTD have been identified by neurologists: behavioral variant; primary progressive aphasia; and semantic variant primary progressive aphasia. Behavioral variant FTD is the most commonly diagnosed type of FTD that involves a progressive decline in the regulation of emotions, judgment and behavior.
Primary progressive aphasia (PPA) primarily affects the ability of the person to form and speak words due to the debilitation of facial muscles. They typically have problems forming complete sentences, will omit or mix up words and speak in fragmented phrases.
Semantic dementia (semantic variant PPA) impacts the ability of the person to understand word meanings, recognize familiar faces and continue using everyday objects they have used in the past. For example, someone with this type of frontotemporal dementia may forget how to turn on a stove, plug in a hairdryer or turn on the faucet. They often fail to recognize a son or daughter, claiming “strangers” are visiting them and they don’t know why they are visiting them.
The difference between FTD subtypes and classic FTD is the severity of personality and behavioral changes. Individuals with one of the FTD subtypes may not exhibit the kind of significant personality/behavioral changes seen in people with general FTD. Alternately, those with FTD may not have the level of language and communication difficulties experienced by adults with a subtype.
Frontotemporal Dementia Symptoms: Early Warning Signs
Behavioral changes are usually the first signs of FTD. These include:
- Behaving inappropriately in social settings: making offensive comments to others or arguing for no apparent reason, touching strangers improperly
- Losing interest in family members and close friends: showing no empathy or understanding of another person’s problems
- Neglecting personal hygiene: adults with FTD are often not aware of their body odor, condition of their hair or bad breath from not brushing their teeth
- Odd eating habits: stuffing too much food into their mouth, trying to eat frozen dinners without microwaving them first, eating nonfood objects
- Developing signs of obsessive-compulsive disorder: hoarding, repeating certain words or phrases, counting steps
Problems with saying and using words correctly may or may not accompany the early onset of FTD’s behavioral symptoms. In most cases, personality and behavioral regression emerge before the appearance of language difficulties.
Some frontotemporal dementia patients will present symptoms similar to those of Parkinson’s disease. These include but are not limited to:
- Difficulty swallowing
- Arm and leg weakness
- Muscle spasms/twitches
- Hand tremors
- Lack of control over speech muscles, the tongue and/or the lips
- Muscle stiffness/moving slower than usual
- Balance issues/uncoordinated movements
Early frontotemporal dementia signs are similar to signs of Alzheimer’s disease but without the rapid deterioration of memory. Most people with FTD will continue remembering things normally for the first few years. However, abnormal behavior progressively worsens which often makes it difficult for the person to live independently.
Progression of Frontotemporal Dementia
Early Stage FTD:
- Memory remains unaffected or just slightly affected
- Normal eating and personal hygiene habits begin to devolve
- Personality changes become more apparent (selfishness, apathy, losing inhibitions more frequently)
- Occasional indications of communication difficulties (speaking in fragments, forgetting words, using words inappropriately)
Early-stage FTD is particularly difficult to detect since changes are so subtle. A study investigating recognition of early symptoms of FTD found that participants reported “increasing apathy and silence” as the initial sign something was wrong with their spouse. Other early signs included becoming easily irritated or offended, worsening paranoia, disorientation and reduced empathy. Many of the participants in the study attributed these early warning signs to the aging process. One participant told researchers she thought her husband was simply “getting old” and that his “bad hearing” was the reason he could not follow conversations.
Middle Stage FTD:
Symptoms of early-stage FTD worsen as the disease progresses. In addition to memory and behavioral changes, people with middle-stage FTD may develop incontinence issues, become more aggressive and combative and experience greater difficulty judging spatial distances. It is during the middle stage of FTD that people begin to fall frequently. At this point, in-home caregivers will be needed to ensure the person is eating properly, taking care of their personal hygiene, staying safe in their own home and adhering to prescription instructions regarding frontotemporal dementia medication.
Late Stage FTD:
Memory loss is much worse during late-stage frontotemporal dementia. In fact, symptoms of late-stage FTD closely resemble symptoms of moderate to severe Alzheimer’s disease. During the final years of living with this disease, patients will need full-time dementia care in a residential facility.
Frontotemporal Dementia Causes and Risk Factors
Currently, doctors have pinpointed only one possible cause and risk factor for someone developing FTD: genetics. Approximately 10 to 15 percent of adults with FTD have a family history of this disease. So far, mutations on eight different genes have been identified as “markers” for possible development of FTD in at-risk individuals.
The chance of inheriting genes with FTD mutations are about 50 percent. For example, if a parent has FTD, their biological children have a 50 percent chance of inheriting frontotemporal dementia genes. Siblings of individuals with FTD genetic mutations also have a 50 percent chance of inheriting them. A recent investigation involving asymptomatic carriers of FTD genes discovered that some carriers may show structural changes within the brain 15 years before early signs of the disease emerge.
Diagnosing and Treating Frontotemporal Dementia
Treatment of FTD involves supportive care and antidepressant or antipsychotic medications to reduce the severity of behavioral symptoms. FTD is not curable, nor can current treatment methods slow the progression of the disease.
Selective serotonin reuptake inhibitors (SSRIs) like Lexapro or Venlafaxine have been shown to help people with FTD gain more control over OCD-like behaviors and food cravings. For those experiencing middle to late-stage FTD symptoms, antipsychotic medications such as Seroquel or Zyprexa may ease delusional thoughts, hallucinations and aggressive episodes. Patients with FTD and Parkinson’s disease cannot take antipsychotic drugs because these medications block dopamine. Parkinson’s patients require dopamine-producing drugs to improve cell signaling in the brain.
Drugs used to treat Alzheimer’s symptoms (cholinesterase inhibitors) do not help adults with FTD. Cholinesterase inhibitors increase levels of a brain chemical called acetylcholine to alleviate cognitive difficulties and delay the progression of Alzheimer’s. Frontotemporal dementia does not damage neurons within the acetylcholine signaling system.
Doctors diagnose FTD by performing several diagnostic and psychological examinations. These include:
- MRI brain scans to detect structural changes to the temporal and frontal lobes
- Fluorodeoxyglucose positron emission tracer scans that show areas of the brain where metabolism and blood flow is impaired
- Performing neuropsychological tests to assess a person’s language abilities, attention span, memory, coordination/balance and reflexes
- Consulting with family members for information about the person’s medical history, when they first noticed symptoms of FTD and if the person has had previous health problems (especially strokes, heart attacks, history of blood clots, diabetes)
Long-term Memory Care for Individuals with Frontotemporal Dementia
Deciding if a family member with FTD should transition to a memory care community can be stressful and difficult. How you answer the following questions may help you make the right decision:
- Do I think it is unsafe for the person to continue living in their home without 24/7 supervision?
- Does the person have health issues other than FTD that may accelerate the progression of the disease?
- Am I capable of providing the type of care the person needs to stay safe and healthy?
- Do I feel like only a caregiver and miss being a son, daughter, relative or friend?
- Has the person already created serious problems involving their safety? (For example, has the person you are caring for started a kitchen fire, fallen in their home or wandered outside?)
Memory care or dementia care apartments are specialized living areas that address the unique needs of people with frontotemporal dementia. They allow residents to enjoy the highest quality of life possible with assistance from trained team members and nurses. In addition to allowing residents to move freely about in a secured living area, a memory care apartment also provides a variety of behavioral, speech and physical therapies and programs for residents according to their individual needs. The purpose of a dementia care community is to maintain a calm, stress-free environment that is shaped by structured daily routines, assistance with daily tasks from caring team members and consistent monitoring of their physical and psychological health.
Rockbridge Oaks Senior Living’s Valeo™ memory care is here to help when you have a family member with FTD who needs to be transitioned to a dementia care community for their own safety and quality of life. The programs at Rockbridge Oaks encourage family involvement in everything we do—from participating in educational classes together to visiting often during social events. Learn more about our custom programming or request a copy of our Guide for Finding the Right Memory Care Community to help you make the best choice for your family.