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What To Expect With Frontotemporal Dementia

Behavioral Variant Frontotemporal Dementia

What to expect with Frontotemporal Dementia?

People with behavioral variant frontotemporal dementia often have trouble controlling their behavior. They may say inappropriate things or ignore other peoples feelings. bvFTD may affect how a person deals with everyday situations. bvFTD can also affect language or thinking skills. Unfortunately, people with bvFTD rarely notice these changes.

Language Variants Of Ftd

In the other two types of FTD, the early symptoms are difficulties with language that progressively get worse. These difficulties become apparent slowly, often over two or more years.

In progressive non-fluent aphasia, these problems are with speech aphasia means loss of language. Common early symptoms may include:

slow, hesitant speech which may seem difficult to produce a person may stutter before they can get the right word out, or may mispronounce it when they do

  • errors in grammar a person may have telegraphic speech, leaving out small link words such as to, from or the
  • impaired understanding of complex sentences, but not single words.

In semantic dementia, speech is fluent but people begin to lose their vocabulary and understanding of what objects are. Common early symptoms may include:

  • asking the meaning of familiar words
  • trouble finding the right word, leading to descriptions instead , or use of less precise words
  • difficulty recognising familiar people or common objects.

In the early stages of both language forms of FTD, other mental abilities tend to be unaffected.

How To Help Someone With Frontotemporal Dementia

The caregiver to a patient with frontotemporal dementia needs to have a lot of patience. The first step is to educate yourself. Learn the symptoms of disease and how to cope with them. Spread the awareness and discuss with all the people around the expected outcomes of the disease. Providing care to a person with frontotemporal dementia is not easy. Always be ready to ask for help.

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What Are The Stages Of Frontotemporal Dementia

On the surface, Joseph, Barbara, and Lloyd may not seem to be experiencing related changes. Each of them, though, turned out to be in the early stage of frontotemporal dementia . FTD is the diagnosis for about 5 percent of people with major neurocognitive disorders . About 70 percent of cases begin before age 65, so it is a more common dementia among the young old. FTD involves degeneration of the frontal and temporal lobes of the brain. The frontal lobes are important regulators of behavior and the temporal lobes assist in our understanding and expression of language. The symptoms of FTD, therefore, include major changes in behavior, impairment of language, or both.

People diagnosed with FTD and family members often ask What stage of dementia is occurring? and the answer to this question can be useful in knowing what to expect in the future. FTD often begins during years when adults expect to be healthy and productive. The average course of the disease takes 6 to 8 years after diagnosis, so patients and their families must confront very serious and increasingly difficult needs. Detailed and complex timelines of the stages of FTD are not very accurate, but it is useful to think of the development of FTD through early, middle, and late stages. Lets look at the stages of frontotemporal dementias to see how these related disorders evolve:

How Is Frontotemporal Dementia Diagnosed

What To Expect With Frontotemporal Dementia?

Family members are often the first to notice subtle changes in behavior or language skills. Its important to see a healthcare provider as early as possible to discuss:

  • Symptoms, when they began, and how often they occur
  • Medical history and previous medical problems
  • Medical histories of family members
  • Prescription medicines, over-the-counter medicines, and dietary supplements taken

No single test can diagnose FTD. Typically, healthcare providers will order routine blood tests and perform physical exams to rule out other conditions that cause similar symptoms. If they suspect dementia, they may:

  • Evaluate neurological status health including reflexes, muscle strength, muscle tone, sense of touch and sight, coordination, and balance
  • Assess neuropsychological status such as memory, problem-solving ability, attention span and counting skills, and language abilities
  • Order magnetic resonance imaging or computed tomography scans of the brain

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What Happens In Bvftd

Due to their impaired judgment, people with bvFTD can fall prey to scams, online or in person. As the disease progresses, this lack of judgment may lead to criminal behavior . At the extreme, the impulsivity can be self-destructive, as when patients try to get out of a moving car. In some people, inappropriate sexual behavior occurs.

There may also be repetitive or compulsive behaviors that may include hoarding, doing the same thing over and over , pacing, or repeating particular catch phrases over and over.

The person with bvFTD may experience false thoughts that are jealous, religious or bizarre in nature. Or they can develop a euphoria excessive or inappropriate elation or exaggerated self-esteem.

Even though they might complain of memory disturbance, people with bvFTD can usually keep track of day-to-day events and understand what is going on around them. Their language skills and memory usually remain intact until late in the disease.

Problems with language and other thinking skills can also happen in bvFTD. People may start speaking in shorter phrases and may eventually lose their ability to speak. Sometimes, people with bvFTD may have weakness in their muscles, difficulty swallowing, or difficulty walking.

These behaviors have a physical cause and are not something that the person can usually control or contain. Indeed, often the person has little or no awareness of the problem behaviors.

Stage : Mild Dementia

At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:

  • Difficulty remembering things about one’s personal history
  • Disorientation
  • Difficulty recognizing faces and people

In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.

Read Also: How To Deal With Dementia Accusations

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Ftd Vs Alzheimers Disease

Frontotemporal Dementia – Staging & Long Term Care (Valerie Cotter)

Both frontotemporal degeneration FTD and Alzheimers disease are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. However, several important distinctions can help to differentiate between the two:

  • FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimers disease is loss of memory.
  • FTD often begins earlier than AD with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimers patient is diagnosed.
  • FTD patients exhibit behavioral and personality changes , but retain cardinal features of memory .
  • AD patients display increasing memory deficits, but typically retain socially appropriate behavior.
  • Some FTD patients may have only language dysfunction . And the pattern of language loss may be specific, such as an inability to name a familiar, everyday object.
  • The language decline seen in AD patients involves a milder problem with recalling names and words.
  • FTD patients are more likely to display early motor abnormalities, such as difficulty walking, rigidity or tremor , or muscle atrophy and weakness.
  • Facts about FTD:

  • FTD affects an estimated 50,000-60,000 Americans .
  • FTD represents an estimated 10-20% of all dementia cases. It is recognized as one of the most common presenile dementias .
  • The prevalence worldwide is uncertain with estimates of FTD amongst people ages 45 to 64 between 15 22 per 100,000 .
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    How Ftd And Alzheimer’s Differ

    In Alzheimers, the typical initial symptoms are short-term memory impairment and difficulty learning something new. In FTD, the memory usually remains intact initially early symptoms include difficulty with appropriate social interactions and emotions, as well as some language challenges.

    FTD and Alzheimers also differ in how the brain is physically affected. FTD mainly affects the brain’s frontal and temporal lobes, whereas Alzheimers affects the temporal lobes in early stages, but with progression impacts most areas of the brain.

    FTD also targets younger individuals. The average age of onset for FTD is about 60 years old. While some people have early-onset Alzheimers, the majority of patients are over 65 and many of those are well into their 70s or 80s.

    Stages Of Frontotemporal Dementia

    While Alzheimers disease is the most common and well-known form of dementia, there are many other types. Frontotemporal dementia is one other type and its a term used to describe a number of disorders that affect the frontal and temporal lobes of the brain. Because these areas are associated with personality, behavior, and language, frontotemporal dementia can drastically change the way a person speaks and acts. The progression of FTD is often separated into stages some in the medical community use a 3-stage model, while others use a 7-stage model. For the purposes of this blog post, well be discussing the 3-stage model which makes a distinction between the early, mid, and late stages of frontotemporal dementia.

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    Changes In Personality And Behavior

    Some people with frontotemporal dementia become uninhibited, resulting in increasingly inappropriate behavior. They may speak rudely. Their interest in sex may increase abnormally.

    Behavior may become impulsive and compulsive. They may repeat the same action over and over. They may walk to the same location every day.

    People with this type of frontotemporal dementia neglect personal hygiene.

    Some people with frontotemporal dementia develop Klüver-Bucy syndrome. Symptoms of this syndrome may include an increased interest in sex and/or a compulsion to pick up and manipulate random objects and put the objects in their mouth. People with this syndrome may suck or smack their lips. They may not be able to recognize familiar objects and people by sight. They may overeat or eat only one type of food.

    Frontotemporal Dementia Treatment And Life Expectancy

    The 7 Stages of Dementia

    Unfortunately, like other dementias, FTD is a progressive disease with no cure.

    That means the symptoms will worsen over time. The speed of decline will be different for each person.

    Treatment optionsCurrent treatments focus on easing symptoms, but cant slow the progression.

    There are medications that can be used to improve quality of life by reducing behavioral symptoms.

    • Selective serotonin reuptake inhibitors like Zoloft or Luvox
    • Antipsychotics like Zyprexa or Seroquel

    Important: These medications must be used with caution because the side effects include an increased risk of death in people with dementia.

    Speech therapy could also help with language issues by teaching alternate communication strategies.

    Life expectancyFrontotemporal dementia shortens a persons life span. Each person is different, but most people with FTD live 6 to 8 years after the first symptoms appear.

    FTD will eventually cause a person to have difficulty with essential bodily functions like chewing, swallowing, moving around, and controlling the bladder and bowels.

    These changes can cause serious infections in the lungs, urinary tract, and skin leading to death.

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    Safety And Supportive Measures

    Creating a safe and supportive environment Creating a Beneficial Environment for People With Dementia Dementia is a slow, progressive decline in mental function including memory, thinking, judgment, and the ability to learn. Typically, symptoms include memory loss, problems using language and… read more can be very helpful.

    Generally, the environment should be bright, cheerful, safe, stable, and designed to help with orientation. Some stimulation, such as a radio or television, is helpful, but excessive stimulation should be avoided.

    Structure and routine help people with frontotemporal dementia stay oriented and give them a sense of security and stability. Any change in surroundings, routines, or caregivers should be explained to people clearly and simply.

    Following a daily routine for tasks such as bathing, eating, and sleeping helps people with frontotemporal dementia remember. Following a regular routine at bedtime may help them sleep better.

    Activities scheduled on a regular basis can help people feel independent and needed by focusing their attention on pleasurable or useful tasks. Such activities should include physical and mental activities. Activities should be broken down in small parts or simplified as the dementia worsens.

    About A Caregivers Guide To Dementia

    Although the public most often associates dementia with Alzheimers disease, the medical profession now distinguishes various types of other dementias. What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration , one of the largest groups of non-Alzheimers dementias. This thoroughly updated edition offers new daily-care ideas for caregivers to implement, reveals new discoveries of how genes and proteins are linked to the causes of dementia, explains the changes in terminology that have developed over the past several years, explores nonpharmacological approaches to managing care, and provides more guidance and resources to aid caregivers along this challenging journey. All contributors to this volume either are specialists in their fields or have exceptional hands-on experience with FTD sufferers. The wealth of information offered in these pages will help both healthcare professionals and caregivers of someone suffering from non-Alzheimers dementia.

    What If Its Not Alzheimers?, 3rd Edition, is available on October 7, 2014. It can be found online, in print and e-book formats from major sellers such as Amazon and Barnes & Noble.

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    Managing Behavior Changes In Ftd

    Behavior changes associated with bvFTD can upset and frustrate family members and other caregivers. Understanding changes in personality and behavior and knowing how to respond can reduce frustration and help provide the best care for a person with FTD.

    Managing behavioral symptoms can involve several approaches. Here are some strategies to consider:

    • Try to accept rather than challenge someone with behavioral symptoms. Arguing or reasoning will not help, because they cannot control their behaviors or see that they are unusual or upsetting to others. Instead, be as sensitive as possible and understand that its the illness talking.
    • Take a timeout when frustrated take deep breaths, count to 10, or leave the room for a few minutes.
    • To deal with apathy, limit choices and offer specific choices. Open-ended questions, such as What do you want to do today? are more difficult to answer than specific ones, such as Do you want to go to the park or for a walk?.
    • Maintain a regular schedule, reduce distractions, and modify the environment to reduce confusion and improve the persons sleep.
    • If compulsive eating is an issue, consider supervising eating, limiting food choices, locking cabinets and the refrigerator, and distracting the person with other activities.

    To ensure the safety of a person and his or her family, caregivers may have to take on new responsibilities or arrange care that was not needed before.

    Can Lifestyle Changes Help Frontotemporal Dementia

    Dementia Diagnosis: Why it’s Important, What to Expect

    Medication can be effective for treating dementia, but lifestyle treatments can help, too. Helping people find a comfortable environment can help them cope with the symptoms of dementia.

    Environment is important. Maintaining an environment that doesnt upset someone is vital. Make sure your home is well-lit and has minimal noise. People with behavior problems need to be in environments that are familiar. They may also need to avoid large crowds.

    People with speech problems may need to be in environments where communication is easier. They may wish to keep tools for communicating, like a pen and paper, with them all the time.

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    Excerpt From What If Its Not Alzheimers

    Part 2 INTRODUCTION: A Framework for Quality of Life with FTD

    Sharon S. Denny, MA

    A Framework for Daily Life

    I didnt cause it. I cant change it, and I cant control it. But I do have choices about how to live each moment. . . . I will make life as enjoyable, dignified, and meaningful as possible for as long as I can.

    Eleanor, caregiver for her husband

    Not too long ago, people receiving a diagnosis of dementia were advised to get their affairs in order and prepare for the end. Public awareness of Alzheimers disease and other dementias and advocacy by people who are themselves diagnosed is starting to reduce past stigma and put more focus on living with the disease. Someone with FTD did nothing to cause the disease, and in the absence of much-needed treatment, cannot control its eventual outcome. But countless large and small choices will help you live as well as possible for as long as possible.

    Consider How You Want to Live

    Adjust Expectations

    Someone with FTD will have more trouble focusing and interacting when they are tired or in an overly stimulating environment. Look for new ways to do things you enjoy and value. Adjusting expectations and planning activities and commitments accordingly will make it possible to stay engaged more effectively with fewer difficulties.

    Develop a Positive Daily Routine

    Be Prepared to Advocate and Educate

    Do Not Go It Alone

    Remember, the goal is to make each day as good as it can be.

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