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What Are The Last Stages Of Frontotemporal Dementia

Home And Residential Care

The Dementia Experience: Frontotemporal Dementia (FTD)

It is important that care home staff are aware of the specific needs of someone living with FTD. However, because it is so rare it is difficult to find a care home or care staff who are familiar with FTD.

To address this, Rare Dementia Support are developing and collecting resources designed to improve understanding of FTD including the inherited forms of FTD among the public and professionals. These can be found on our Learning page.

Care home staff may also find our short film useful, which features the experiences and challenges of those living with FTD, as well as clinical explanations and insights. People affected by FTD have also found this to be a useful tool in describing their experiences. Watch the film here.

Some people may also find the Care Quality Commission care home finder tool useful. Here you can search for care homes in England based on your geographical area and see independent reviews of the quality of care. You can filter by age and condition so you are are more likely to find somewhere suitable to your needs.

For those living in other parts of the UK, the following sites can provide similar services:

Northern Ireland: Regulation and Quality Improvement Authority

Support In Later Stages

This page aims to guide all those affected by a diagnosis of behavioural variant frontotemporal dementia through the later stages of the condition. This includes carers, family and friends.

Much of this advice will also apply to those living with the language forms of frontotemporal dementia , specifically semantic dementia and progressive nonfluent aphasia . However you will find more tailored information for these forms of FTD on our Primary progressive aphasia page.

Caring For A Loved One

Some tips for keeping the person safe and maximizing their quality of life include:

  • helping them manage their finances and apply for disability payments, if appropriate
  • preempting any physical, social, or psychological risks they may face
  • making adaptations to reduce the risk of falls
  • seeking counseling for depression and anxiety, if applicable
  • maintaining a regular routine
  • helping them avoid triggers of hypersexuality, overeating, and other behaviors that can lead to problems

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Stage 3 Mild Changesquality Of Life: Very Little Impact

You likely will start to notice changes in your loved ones thinking and reasoning. You also will see some memory loss. You may see your loved one:

  • Show some signs of forgetfulness, such as losing an item and not being able to retrace steps to find it.
  • Have some difficulty finding the right words or names.
  • Take more effort to remember appointments, manage money, and manage medicines.
  • Have trouble paying attention all the time.
  • Begin to have problems at work.

How You Can Help:

If you havent already done it, help your loved one plan for when he or she might have severe dementia. Use our tools to create a document that list his or her values and priorities at different stages of dementia.

If you have, help the health care team follow your loved ones care preferences.

You can also help with:

  • Organizing appointments.
  • Managing medicines, such as using a pill organizer.
  • Helping to put legal and financial documents in order.
  • Start to do more of the driving, if possible.

What Are The Types Of Frontotemporal Dementia

Dementia: Symptoms, Stages, Types, &  Treatment

There are several disorders that can result in frontotemporal dementia, all of which can affect middle-aged and older adults.

  • Behavioral variant frontotemporal dementia is the most common frontotemporal disorder. It causes changes in personality, behavior, emotions, and judgment.
  • Primary progressive aphasia involves changes in the ability to communicate to speak, read, write, and understand what others are saying.
  • Movement disorders happen when the parts of the brain that control movement are affected. There are two types of rare movement disorders associated with FTD: corticobasal syndrome and progressive supranuclear palsy. Other movement-related disorders include frontotemporal dementia with parkinsonism and frontotemporal dementia with amyotrophic lateral sclerosis . Symptoms can vary among these movement disorders.

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Stage : Moderate Dementia

Patients in stage 5 need some assistance in order to carry out their daily lives. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented about the time and place, have trouble making decisions, and forget basic information about themselves, such as a telephone number or address.

While moderate dementia can interfere with basic functioning, patients at this stage do not need assistance with basic functions such as using the bathroom or eating. Patients also still have the ability to remember their own names and generally the names of spouses and children.

What Are The Complications Of Frontotemporal Dementia

FTD is not life-threatening people may live with it for years. But it can lead to an increased risk for other illnesses that can be more serious. Pneumonia is the most common cause of death, with FTD. People are also at increased risk for infections and fall-related injuries.

As FTD progressively worsens, people may engage in dangerous behaviors or be unable to care for themselves. They may need 24-hour nursing care or to stay in an assisted living facility or nursing home.

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Treatments For Frontotemporal Dementia

There’s currently no cure for frontotemporal dementia or any treatment that will slow it down.

But there are treatments that can help control some of the symptoms, possibly for several years.

Treatments include:

  • medicines to control some of the behavioural problems
  • therapies such as physiotherapy, occupational therapy, and speech and language therapy for problems with movement, everyday tasks and communication
  • dementia activities such as memory cafes, which are drop-in sessions for people with memory problems and their carers to get support and advice
  • support groups who can offer tips on managing symptoms from dementia experts and people living with frontotemporal dementia, and their families

How Dementia Progresses

Frontotemporal Dementia

When an individual is diagnosed with Dementia, no one knows exactly how soon one will deteriorate into the final stages as the progression of the disease varies widely from patient to patient. disease progression also varies with the type of Dementia the four most common types are:

  • Alzheimers Disease, which affects memory first ad progresses to other cognitiveabilities such as speech, reasoning, and movement

  • Vascular Dementia, often the result of a stroke in which areas of the brain sufferirreversible damage, with symptoms varying upon the area affected

  • Lewy Body Dementia, which leads to decreases in cognitive ability, hallucinations,delusions, and movement problems

  • Frontotemporal Dementia, affecting speech and personality but not memory

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    Is There A Cure For Ftd

    Unfortunately, there is no cure yet. However, some treatments may help alleviate symptoms. Drugs such as antidepressants and antipsychotics could help with certain behavioral symptoms, though patients should consult with a specialist before considering taking these drugs. Patients with language difficulties may benefit from speaking with a speech and language pathologist. People with FTD live for six to eight years on average.

    Learn more about different types of dementia here.

    What Are The Stages Of Frontotemporal Dementia

    James M. Ellison, MD, MPH

    Swank Center for Memory Care and Geriatric Consultation, ChristianaCare

    • Expert Advice

    Learn about the symptoms associated with the early, middle, and late 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.

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    Trouble With Balance And Mobility

    At Easter 2016 we reached another crisis when her weight dropped drastically and a PEG tube was considered, but it was decided that she would be at great risk if she underwent the operation. However, once she came off her medication for osteoporosis she began to take food again and regained weight.

    Stages Of Frontotemporal Dementia

    Safety in Dementia

    Like many forms of dementia, frontotemporal dementia starts slowly, with subtle symptoms, and then gradually worsens over time. Unlike most other forms of dementia, frontotemporal dementia does not immediately present with memory problems, and often strikes early, normally affecting people aged from forty to sixty . This can mean that the behavioral and neurological effects of the condition are misdiagnosed or missed altogether, in the initial stages.

    The following are the seven stages of frontotemporal dementia:

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    How Centric Healthcare Can Help

    Caring for a loved one with Dementia becomes increasingly difficult as the months and years pass. Caregivers can become overwhelmed, even in the earlier stages, because so many tasks must be performed. You dont have to take the journey alone. Centric Health Care can provide you with a wide variety of services that will keep your loved one happy, healthy, and engaged.

    Getting help and guidance soon after diagnosis is essential. Our staff will conduct an initial evaluation of your loved ones situation and recommend the frequency for a trained private home nurse along with other tailored services that your loved one will need. Because needs change quickly, we also schedule periodic evaluations to make sure that all care requirements are continuously met.

    Additionally, we have staff who specialize in providing care specifically for dementia patients. Our specialized care includes:

  • Walking and transferring assistance

  • Stage : Normal Outward Behavior No Dementiaquality Of Life: No Impact

    You wont notice any changes with your loved one.

    How You Can Help:

    If you and your loved one are concerned about dementia, start to plan now. Use our tools to help your loved one document his or her values and priorities about the type of care wanted during the various stages of dementia. You can also watch for new signs that you may not have seen before.

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    What Is The History Behind Ftd

    Dr. Arnold Pick, a German neurologist, discovered Picks disease in 1892. He encountered a patient with distinct symptoms affecting their language, so Pick wanted to dig deeper. This patient is believed to be the first documented case of primary progressive aphasia. Later, he looked at two other patients who were experiencing behavioral changes, decreased cognitive function and language difficulties. Pick determined that dementia can affect certain regions of the brain that cause these particular changes.

    What Should Be Your Role As A Caregiver In The End

    Frontotemporal dementia FTD (Pick’s disease) – Moderate stage

    During the final stage of dementia, the affected individual becomes completely dependent on the people around them to carry out basic activities.

    If a person is a caregiver, they need to take care of the patient regarding certain important aspects, including:


    The appetite of the affected individual may decrease in the final stages of dementia due to the inability to stay physically active. They may forget to eat food or drink fluids.

    To help ensure that the person in the final stage of dementia receives adequate nutrition, try the following tips:

    Bowel and bladder function

    The patient may eventually lose control of bladder and bowel function in the final stage of dementia.

    To maintain bowel and bladder function, try the following tips:

    Skin and bone health

    A patient with end-stage Alzheimers disease can eventually become bedridden or chair-bound. This can result in skin breakdown, pressure sores, and freezing of joints .

    To keep the skin healthy and bones functioning, try the following tips:

    Oral hygiene

    Good oral hygiene reduces the risk of bacteria in the mouth that can lead to infections, including pneumonia. Brush the patients teeth every time after the patient eats. If the patient wears dentures, remove them and clean them every night.

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    Stage : Mild Cognitive Impairment

    Clear cognitive problems begin to manifest in stage 3. A few signs of stage 3 dementia include:

    • Getting lost easily
    • Noticeably poor performance at work
    • Forgetting the names of family members and close friends
    • Difficulty retaining information read in a book or passage
    • Losing or misplacing important objects
    • Difficulty concentrating

    Patients often start to experience mild to moderate anxiety as these symptoms increasingly interfere with day to day life. Patients who may be in this stage of dementia are encouraged to have a clinical interview with a clinician for proper diagnosis.

    How Can Healthcare Professionals Help At This Stage

    Healthcare professionals can explain these changes so you understand what is happening.

    Healthcare professionals can also take steps to reduce the persons pain or distress, often using medication.

    If the person cant swallow, then medication can be provided through patches on the skin, small injections or syringe pumps that provide a steady flow of medication through a small needle under the persons skin. Speak to a GP or another health professional about this.

    Talking Point

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    Outlook For Frontotemporal Dementia

    How quickly frontotemporal dementia gets worse varies from person to person and is very difficult to predict.

    People with the condition can become socially isolated as the illness progresses. They may not want to spend time in the company of others, or may behave in rude or insulting ways.

    Home-based help will usually be needed at some stage, and some people will eventually need care in a nursing home.

    The average survival time after symptoms start is around 8 to 10 years. But this is highly variable and some people live much longer than this.

    If you or a loved one has been diagnosed with dementia, remember you’re not alone. The NHS and social services, as well as voluntary organisations and specialist support groups, can provide advice and support for you and your family.

    What Is Frontotemporal Dementia Causes Symptoms And Treatments

    Dementia: Stages Of Frontotemporal Dementia

    Frontotemporal lobar degeneration, also known as frontotemporal dementia , refers to various disorders that cause cell damage and affect the brain. FTD is the fourth most common cause of dementia.

    The Alzheimers Association estimates that 50,00060,000 people in the United States have FTD, and the majority of patients are between 45 and 65 years old.

    FTD occurs when the frontal and temporal lobes of the brain shrink. The frontal and temporal lobes are responsible for personality, behavior and language. Due to the shrinkage of the lobes, people living with FTD often experience drastic behavioral or verbal changes before exhibiting signs of memory loss.

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    Types Of Frontotemporal Dementia

    There are two primary types and a third rarer form of frontotemporal dementia:

  • Frontal or behavioral variant frontotemporal dementia typically impacts an individual’s behavior and personality. This type involves nerve cell loss in the areas responsible for empathy, conduct, control, judgment, foresight, and other abilities.
  • Primary progressive aphasia can impact an individual’s speech centers, affecting ability to write, speak, and comprehend. This type of frontotemporal dementia can be segmented into two subtypes:
  • Semantic PPA dementia affects an individual’s ability to understand and use language. They could lose the ability to formulate words in a sentence or understand those words.
  • The progressive non-fluent variant of PPA impacts an individual’s ability to speak. Their speech could be labored, very hesitant, or ungrammatical.
  • If your loved one has disturbances in motor skills, the frontotemporal disorder can be with behavior or language complications.
  • Amyotrophic lateral sclerosis, ALS, or Lou Gehrig’s disease causes the wasting away of or weakness of muscles.
  • Progressive supranuclear palsy causes changes in posture, difficulty walking, eye movement complications, and muscle stiffness.
  • Corticobasal syndrome causes legs and arms to be stiff or uncoordinated.
  • How Is Frontotemporal Dementia Treated

    Currently, no treatments are available to cure or slow the progression of FTD, but healthcare providers may prescribe medicine to treat symptoms. Antidepressants may help treat anxiety and control obsessive-compulsive behaviors and other symptoms. Prescription sleeping aids can help ease insomnia and other sleep disturbances. Antipsychotic medicine may reduce irrational and compulsive behaviors.

    Behavior modification may help control unacceptable or risky behaviors.

    Speech and language pathologists and physical and occupational therapists can help adjustment to some of the changes caused by FTD.

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    What Are Specific Care Needs At Each Stage

    An individual may not require care assistance after the initial diagnosis of dementia, but that will change as the disease progresses and symptoms become worse. There are about 16 million unpaid caregivers of people with dementia in the United States. While many caregivers are providing daily help for family members, they also hire someone to help. There are many options of care assistance, such as in-home care, adult day care, and nursing home care. There is also financial assistance available.

    Early Stage DementiaAs mentioned above, in the early stage of dementia a person can function rather independently and requires little care assistance. Simple reminders of appointments and names of people may be needed. Caregivers can also assist with coping strategies to help loved ones remain as independent as possible, such as writing out a daily to-do list and a schedule for taking medications. Safety should always be considered, and if any tasks cannot be performed safely alone, supervision and assistance should be provided. During this period of dementia, its a good idea for caregivers and loved ones to discuss the future. For example, a long-term care plan should be made and financial and legal matters put in place.

    What Are The Causes Of Frontotemporal Dementia

    What to expect with 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 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.

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