Materiały źródłowe

• #1 Advanced Practice Nursing: Meeting the Caregiving Challenges for Families of Persons with Frontotemporal Dementia

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2943420/

  Frontotemporal dementia (FTD), once thought to be a rare cause for dementia, is now acknowledged to be the most common presenile (before age 65) cause of dementia. FTD is associated with profound changes in behavior, personality, emotions, and cognition. The purpose of this paper is to describe two cases of patients with FTD in order to illustrate salient aspects of the caregiving experience. Issues faced by caregivers are organized into 6 categories: diagnosis, behavioral symptoms, function, communication, long term management and care, and maintenance of the caregivers emotional and physical health. Examples of interventions directed by advanced practice nurses are described. We suggest that management of FTD requires expertise as scientific advances and discoveries about FTD continually change the landscape of care.

• #2 Frontotemporal dementia – Wikipedia

  https://en.wikipedia.org/wiki/Frontotemporal_dementia

  Frontotemporal dementia (FTD), also called frontotemporal degeneration disease or frontotemporal neurocognitive disorder, encompasses several types of dementia involving the progressive degeneration of the brain’s frontal and temporal lobes. […] There is currently no cure or approved symptomatic treatment for FTD exists, although some off-label drugs and behavioral methods are prescribed. […] The International Classification of Diseases recognizes the disease as causative to disorder affecting mental and behavioural aspects in humans. […] A gradual onset and progression of changes in behavior or language deficits are reported to have begun several years prior to presentation to a neurologist. […] Currently, there is no cure for FTD. Treatments are available to manage the behavioral symptoms. Rehabilitation services supporting every day functioning have demonstrated some positive results, in particular the Tailored Activity Programme, which is occupational therapy based. Positive behavior support (PBS) has also been identified as potentially beneficial for people with bvFTD.

• #3 Caring for a Person With a Frontotemporal Disorder | National Institute on Aging

  https://www.nia.nih.gov/health/frontotemporal-disorders/caring-person-frontotemporal-disorder

  People living with frontotemporal dementia (FTD) and other frontotemporal disorders may experience many symptoms, including unusual behaviors, emotional problems, trouble communicating, difficulty with work, or difficulty with movement and walking. Caring for someone with FTD can be hard, both physically and emotionally. Caregivers may face challenges with managing medical and day-to-day care, as well as changing family and social relationships, loss of work, poor health, stress, decisions about long-term care, and end-of-life concerns. […] There is no cure for FTD and related frontotemporal disorders, and no way to slow them down or prevent them. However, there are ways to help manage symptoms. […] Caring for someone with FTD and related disorders presents unique challenges. Many caregivers face declines in their own health while caring for them.

• #4 Frontotemporal Dementia | Types of Dementia | UPMC Senior Services

  https://www.upmc.com/services/seniors/resources-for-caregivers/dementia/frontotemporal-dementia

  For most people with FTD, the cause of the disease is unknown. […] Complications of FTD include balance problems, risk of falling, trouble swallowing, and problems interacting with others. […] Unlike Alzheimer’s disease, memory loss is not one of the first symptoms of FTD. […] Signs of FTD may include social, language, and physical problems. […] People with FTD may form odd social behaviors, neglect their hygiene, and lack empathy for others. […] As FTD gets worse, language issues become more common. […] People with FTD often have stiffness or weakness in arms and legs, balance problems, and trouble with eye movements. […] FTD is challenging to diagnose. […] There’s no cure for FTD. But you can manage some symptoms of the disease and improve your quality of life. […] Doctors may suggest medicine, speech and language therapy, and physical and occupational therapy for treating FTD symptoms. […] Someone with FTD will get worse as time goes on. The average life span for someone with FTD is 7 to 13 years after the start of symptoms.

• #5 Caring for a Person With a Frontotemporal Disorder | National Institute on Aging

  https://www.nia.nih.gov/health/frontotemporal-disorders/caring-person-frontotemporal-disorder

  People living with frontotemporal dementia (FTD) and other frontotemporal disorders may experience many symptoms, including unusual behaviors, emotional problems, trouble communicating, difficulty with work, or difficulty with movement and walking. Caring for someone with FTD can be hard, both physically and emotionally. Caregivers may face challenges with managing medical and day-to-day care, as well as changing family and social relationships, loss of work, poor health, stress, decisions about long-term care, and end-of-life concerns. […] There is no cure for FTD and related frontotemporal disorders, and no way to slow them down or prevent them. However, there are ways to help manage symptoms. […] Caring for someone with FTD and related disorders presents unique challenges. Many caregivers face declines in their own health while caring for them.

• #6 Frontotemporal dementia – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/diagnosis-treatment/drc-20354741

  Our caring team of Mayo Clinic experts can help you with your frontotemporal dementia-related health concerns […] As frontotemporal dementia symptoms get worse, you’ll need the help of caregivers. Caregivers can help you with daily activities, help maintain your safety, provide transportation and help with finances. […] Caregivers may be able to address behavioral symptoms by changing the way they interact with people with dementia. Ask your loved one’s healthcare professional about resources that provide training in caring for someone with dementia. […] Caring for someone with frontotemporal dementia can be challenging because FTD can cause extreme personality changes and behavioral symptoms. It may be helpful to educate others about behavioral symptoms and what they can expect when spending time with your loved one.

• #7 Caring for a Person With a Frontotemporal Disorder | National Institute on Aging

  https://www.nia.nih.gov/health/frontotemporal-disorders/caring-person-frontotemporal-disorder

  For many caregivers, there comes a point when they can no longer take care of the person with FTD without professional help. The caregiving demands are simply too great, and the person may need around-the-clock care. […] The decision to move the person with FTD to a care facility can be difficult, but it can also give caregivers peace of mind to know that the person is safe and getting good care. […] It is difficult, but important, to plan for the end of life. Legal documents, such as a will, living will, and durable powers of attorney for health care and finances, should be created or updated as soon as possible after a diagnosis of FTD or a related disorder.

• #8 Caring for a Person With a Frontotemporal Disorder | National Institute on Aging

  https://www.nia.nih.gov/health/frontotemporal-disorders/caring-person-frontotemporal-disorder

  For many caregivers, there comes a point when they can no longer take care of the person with FTD without professional help. The caregiving demands are simply too great, and the person may need around-the-clock care. […] The decision to move the person with FTD to a care facility can be difficult, but it can also give caregivers peace of mind to know that the person is safe and getting good care. […] It is difficult, but important, to plan for the end of life. Legal documents, such as a will, living will, and durable powers of attorney for health care and finances, should be created or updated as soon as possible after a diagnosis of FTD or a related disorder.

• #9 Caring for a Person With a Frontotemporal Disorder | National Institute on Aging

  https://www.nia.nih.gov/health/frontotemporal-disorders/caring-person-frontotemporal-disorder

  People living with frontotemporal dementia (FTD) and other frontotemporal disorders may experience many symptoms, including unusual behaviors, emotional problems, trouble communicating, difficulty with work, or difficulty with movement and walking. Caring for someone with FTD can be hard, both physically and emotionally. Caregivers may face challenges with managing medical and day-to-day care, as well as changing family and social relationships, loss of work, poor health, stress, decisions about long-term care, and end-of-life concerns. […] There is no cure for FTD and related frontotemporal disorders, and no way to slow them down or prevent them. However, there are ways to help manage symptoms. […] Caring for someone with FTD and related disorders presents unique challenges. Many caregivers face declines in their own health while caring for them.

• #10

  https://www.nhs.uk/conditions/frontotemporal-dementia/treatment/

  There’s currently no cure for frontotemporal dementia, but there are treatments that can help manage some of the symptoms. […] Before treatment starts, your current and future health and social care needs will be assessed, and a care plan drawn up. […] This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance. […] Medicines cannot stop frontotemporal dementia getting worse, but it can help reduce some of the symptoms for some people. […] In addition to medicines, there are a number of therapies and practical measures that can help make everyday living easier for someone with dementia. […] If you’ve been diagnosed with dementia, you might want to make arrangements for your care that take into account the decline in your mental abilities. […] If you care for someone with dementia, you may find it helpful to read more about: Looking after someone with dementia.

• #11

  https://www.nhs.uk/conditions/frontotemporal-dementia/treatment/

  There’s currently no cure for frontotemporal dementia, but there are treatments that can help manage some of the symptoms. […] Before treatment starts, your current and future health and social care needs will be assessed, and a care plan drawn up. […] This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance. […] Medicines cannot stop frontotemporal dementia getting worse, but it can help reduce some of the symptoms for some people. […] In addition to medicines, there are a number of therapies and practical measures that can help make everyday living easier for someone with dementia. […] If you’ve been diagnosed with dementia, you might want to make arrangements for your care that take into account the decline in your mental abilities. […] If you care for someone with dementia, you may find it helpful to read more about: Looking after someone with dementia.

• #12 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  Although there are currently no disease-modifying treatments available for FTD, there are resources to learn how to best approach common symptoms in FTD, reduce stress and promote quality of life. […] FTD Support groups offer an emotionally supportive environment in which to discuss care challenges and approaches. […] Building a care team of professionals, friends and family can help support changes that can occur throughout the journey. […] AFTD is here to guide you by offering the best information available to learn how to navigate common challenges in FTD as part of a person-centered plan that considers the person’s individual needs, history, and goals. […] It is important for people with FTD to stay engaged in enjoyable, meaningful and stimulating activities of their choosing as long as they are able and it is safe to do so.

• #13 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  Quality health care in FTD depends on finding the right health professionals, advocating for services, arranging payment, and following up. However, coordinating care at this level can be a dauntingly complex task. If you are managing the health care needs of a loved one with FTD, the following information can help guide you. […] If you are the primary caregiver, it is likely your responsibility to schedule appointments, provide insurance, and medical information and handle numerous care-related tasks. […] People can live for many years with FTD. Maintaining the highest possible quality of life will likely require engagement with a broadly comprehensive medical team: a primary care physician, neurologist, psychiatrist or geriatrician, and other specialists, in addition to a case manager, community services, family, and friends. No one can manage FTD without help.

• #14 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  Quality health care in FTD depends on finding the right health professionals, advocating for services, arranging payment, and following up. However, coordinating care at this level can be a dauntingly complex task. If you are managing the health care needs of a loved one with FTD, the following information can help guide you. […] If you are the primary caregiver, it is likely your responsibility to schedule appointments, provide insurance, and medical information and handle numerous care-related tasks. […] People can live for many years with FTD. Maintaining the highest possible quality of life will likely require engagement with a broadly comprehensive medical team: a primary care physician, neurologist, psychiatrist or geriatrician, and other specialists, in addition to a case manager, community services, family, and friends. No one can manage FTD without help.

• #15 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  Quality health care in FTD depends on finding the right health professionals, advocating for services, arranging payment, and following up. However, coordinating care at this level can be a dauntingly complex task. If you are managing the health care needs of a loved one with FTD, the following information can help guide you. […] If you are the primary caregiver, it is likely your responsibility to schedule appointments, provide insurance, and medical information and handle numerous care-related tasks. […] People can live for many years with FTD. Maintaining the highest possible quality of life will likely require engagement with a broadly comprehensive medical team: a primary care physician, neurologist, psychiatrist or geriatrician, and other specialists, in addition to a case manager, community services, family, and friends. No one can manage FTD without help.

• #16 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  There is a wide array of community services that can assist you with managing daily care. You may not need them at the moment, or at all, but becoming familiar with these resources now will make transitions in care easier. […] For many families, there comes a time when it becomes necessary to move a loved one with FTD into a facility. This can be a difficult transition to consider, but in many situations the facility may offer both the person with FTD and their care partners the best possible quality of life. […] Because the disease will progress, caregivers must plan ahead and periodically reassess how best to provide care for their loved one and meet their own needs over the course of the illness. The decision to move into a facility is an emotionally and logistically complex one. […] Across all levels of care, the placement is more likely to succeed when family members develop a partnership with the facility staff and administration to work together in providing quality patient care. Frontotemporal degeneration is still unfamiliar to many facility providers. Be prepared to educate, advocate, and show how you will be a member of the team as everyone involved shares the goal of providing the best possible care.

• #17 Course Content – #96103: Frontotemporal Dementia – NetCE

  https://www.netce.com/coursecontent.php?courseid=2910

  Frontotemporal dementia (FTD) is a group of degenerative brain disorders characterized by behavior and language problems and also overlapping with some motor/movement diseases. […] There is presently no effective treatment for FTD, and symptom management can be challenging for healthcare providers and family caregivers. […] Management of FTD includes providing care to patients with FTD and support to their families. Caring for a person with FTD involves managing the symptoms, keeping the patient safe, and providing help in activities of daily living. […] Nurses play an important role in caring for those with FTD and providing support to their families. Nurses interact with patients with FTD and their families in the outpatient clinic setting, in-home care setting, and long-term care facility and may be involved in monitoring symptoms, developing and implementing individualized patient care plans, and providing direct patient care.

• #18 Frontotemporal Dementia – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version

  https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/delirium-and-dementia/frontotemporal-dementia

  Frontotemporal dementia, which refers to a group of dementias, results from hereditary or spontaneous (occurring for unknown reasons) disorders that cause the frontal and sometimes the temporal lobe of the brain to degenerate. […] Treatment aims to manage symptoms. […] Generally, treatment focuses on managing symptoms and providing support. […] For example, if compulsive behavior is a problem, antipsychotic medications may be used. Speech therapy may help people with language problems. […] Creating a safe and supportive environment can be very helpful. […] Structure and routine help people with frontotemporal dementia stay oriented and give them a sense of security and stability. […] Following a daily routine for tasks such as bathing, eating, and sleeping helps people with frontotemporal dementia remember.

• #19 Frontotemporal Dementia – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version

  https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/delirium-and-dementia/frontotemporal-dementia

  Frontotemporal dementia, which refers to a group of dementias, results from hereditary or spontaneous (occurring for unknown reasons) disorders that cause the frontal and sometimes the temporal lobe of the brain to degenerate. […] Treatment aims to manage symptoms. […] Generally, treatment focuses on managing symptoms and providing support. […] For example, if compulsive behavior is a problem, antipsychotic medications may be used. Speech therapy may help people with language problems. […] Creating a safe and supportive environment can be very helpful. […] Structure and routine help people with frontotemporal dementia stay oriented and give them a sense of security and stability. […] Following a daily routine for tasks such as bathing, eating, and sleeping helps people with frontotemporal dementia remember.

• #20 Frontotemporal Dementia – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version

  https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/delirium-and-dementia/frontotemporal-dementia

  Activities scheduled on a regular basis can help people feel independent and needed by focusing their attention on pleasurable or useful tasks. […] Caring for people with dementia is stressful and demanding, and caregivers may become depressed and exhausted, often neglecting their own mental and physical health. […] Caregivers can get this information from nurses, social workers, organizations, and published and online materials. […] Caregivers need to remember to take care of themselves. […] Before people with frontotemporal dementia become too incapacitated, decisions should be made about medical care, and financial and legal arrangements should be made. […] As frontotemporal dementia worsens, treatment tends to be directed at maintaining the person’s comfort rather than at attempting to prolong life.

• #21 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  Although there are currently no disease-modifying treatments available for FTD, there are resources to learn how to best approach common symptoms in FTD, reduce stress and promote quality of life. […] FTD Support groups offer an emotionally supportive environment in which to discuss care challenges and approaches. […] Building a care team of professionals, friends and family can help support changes that can occur throughout the journey. […] AFTD is here to guide you by offering the best information available to learn how to navigate common challenges in FTD as part of a person-centered plan that considers the person’s individual needs, history, and goals. […] It is important for people with FTD to stay engaged in enjoyable, meaningful and stimulating activities of their choosing as long as they are able and it is safe to do so.

• #22 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #23 Frontotemporal Dementia

  https://www.caregiver.org/resource/frontotemporal-dementia/

  No medications are known currently to treat, prevent, or slow the advancement of FTD. Serotonin-boosting medications may alleviate some behaviors. […] Non-pharmacological behavioral management strategies, such as redirection or distraction, can also be used to direct behavior in a positive way. […] It’s vital for you, as the caregiver, to have breaks and time off from constant caregiving demands. Self-care is essential for your own mental and physical health, and it supports your ability to care for your friend or family member when they need you. […] Plan your breaks and time away from caregiving. Respite care (care of your friend or family member during your time away) can be arranged with the help of a friend or family member you may want to consider the support of a home health worker. […] Some organizations even have programs to support respite care to ensure the primary caregiver gets time away.

• #24 Frontotemporal dementia: Treatment – UpToDate

  https://www.uptodate.com/contents/frontotemporal-dementia-treatment

  Frontotemporal dementia (FTD) is a neuropathologically and clinically heterogeneous disorder characterized by focal degeneration of the frontal and/or temporal lobes. Age of onset is typically in the late 50s or early 60s. The primary initial clinical manifestations include changes in personality and social behavior or language, progressing over time to a more global dementia affecting other cognitive domains. A subset of patients may also exhibit symptoms of extrapyramidal or motor neuron involvement during the disease course. […] There are no current disease-modifying treatments for FTD approved by the US Food and Drug Administration (FDA), although active investigations are underway. Since the underlying pathology of FTD usually consists of tau or TAR DNA binding protein (TDP-43) aggregates, treatments geared toward beta-amyloid reduction that appear promising in Alzheimer disease (AD) are not expected to be effective for FTD.

• #25 Frontotemporal Dementia

  https://www.caregiver.org/resource/frontotemporal-dementia/

  No medications are known currently to treat, prevent, or slow the advancement of FTD. Serotonin-boosting medications may alleviate some behaviors. […] Non-pharmacological behavioral management strategies, such as redirection or distraction, can also be used to direct behavior in a positive way. […] It’s vital for you, as the caregiver, to have breaks and time off from constant caregiving demands. Self-care is essential for your own mental and physical health, and it supports your ability to care for your friend or family member when they need you. […] Plan your breaks and time away from caregiving. Respite care (care of your friend or family member during your time away) can be arranged with the help of a friend or family member you may want to consider the support of a home health worker. […] Some organizations even have programs to support respite care to ensure the primary caregiver gets time away.

• #26 Frontotemporal Dementia: A Review for Primary Care Physicians | AAFP

  https://www.aafp.org/pubs/afp/issues/2010/1201/p1372.html

  Frontotemporal dementia (FTD) is one of the most common forms of dementia in persons younger than 65 years. […] Primary care physicians have a critical role in identifying patients with FTD and assembling an interdisciplinary team to care for patients with FTD, their families, and caregivers. […] Primary care physicians are well positioned to suspect and diagnose FTD, and to provide the appropriate assistance and resources. In addition, primary care physicians are integral in coordinating an appropriate interdisciplinary team to manage FTD. […] There is no specific cure for FTD; treatment is focused on symptom management and support for patients, families, and caregivers. […] Selective serotonin reuptake inhibitors are commonly used and may be beneficial for behavioral symptoms, including disinhibition, depressive symptoms, and repetitive behaviors.

• #27 Frontotemporal Dementia: A Review for Primary Care Physicians | AAFP

  https://www.aafp.org/pubs/afp/issues/2010/1201/p1372.html

  Patients with aggressive behavior or outbursts may respond to small doses of antipsychotics; however, the benefits and risks associated with potential adverse effects must be considered. […] Primary care physicians may want to seek guidance from neurologists or other subspecialists, such as psychiatrists, to assist with treatment-refractory FTD or to identify the optimal medication regimen to alleviate symptoms. […] Because of the intense emotional and resource requirements of families and caregivers of patients with FTD, it is important that their needs are also met. Support groups for families and caregivers are important, and their use should not be delayed until the late stages of FTD.

• #28 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  These activities are often the most effective way of helping a person with FTD to maintain a good quality of life. It is important to try this before considering treatments with medicines. […] Speech and language therapy can make a big difference for someone with a language-led dementia. […] It’s important to try to access speech and language therapy as soon as possible rather than waiting for a crisis, such as the loss of an essential communication skill.

• #29 Frontotemporal dementia: Types, symptoms, and treatment

  https://www.medicalnewstoday.com/articles/316113

  In late stage FTD, people often experience difficulties with both language and behavior, and their memory usually starts to deteriorate. Some people with this stage of the condition need 24-hour care. […] Behavior-related approaches and medications may help manage agitation and behaviors that may pose a threat to the well-being of the individual or another person. For example, a doctor may prescribe antidepressants or antipsychotic drugs. […] A speech therapist can help the individual maintain their language skills and find new ways to communicate. This could include using a notebook, photos, gestures, sign language, or drawings. […] 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.

• #30 Frontotemporal Dementia | What it is, symptoms and treatments

  https://www.agespace.org/dementia/different-types-of-dementia/frontotemporal-dementia

  There is no straightforward way to diagnose frontotemporal dementia. […] Unfortunately there is no cure for frontotemporal dementia though research is ongoing. There are medications and treatments which can help manage some of the symptoms. […] A type of antidepressant called an SSRI may be prescribed to control the impulsive and compulsive behaviours that some people with FTD develop. […] Occupational therapy can help a person to identify day-to-day tasks that they struggle with and find solutions. […] Speech and language therapy can help to address the language problems that are common among people with frontotemporal dementia.

• #31 Frontotemporal Dementias

  https://practicalneurology.com/diseases-diagnoses/alzheimer-disease-dementias/frontotemporal-dementias/31537/

  Physical therapy or occupational therapy evaluations should be sought for falls and balance problems and home safety. […] The majority of caregivers will benefit from referral to local FTD or dementia support groups, and other resources to manage problematic behaviours such as behavior change charts. […] Pharmacologic management of difficult behaviours is limited to off-label use of neurotransmitter modulators, including selective serotonin reuptake inhibitors (SSRIs) or trazadone for disinhibition, agitation, or compulsive/perseverative behaviors. […] When severe or potentially harmful, psychosis or aggression may require neuroleptic medications, although evidence from randomized clinical trials is lacking. […] Although no disease-modifying therapies are yet approved for FTD, promising results are emerging from rodent models including gene therapy (targeting C9ORF72, and TMEM106B) and replenishing progranulin deficiency.

• #32 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  In these stages, the goals of care become comfort and hospice care can support these efforts. […] Caring for a person with FTD is an extremely difficult, frustrating, and often emotionally overwhelming journey. […] Acknowledge and manage your feelings. […] Trust yourself. […] Taking care of yourself is essential.

• #33 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  In these stages, the goals of care become comfort and hospice care can support these efforts. […] Caring for a person with FTD is an extremely difficult, frustrating, and often emotionally overwhelming journey. […] Acknowledge and manage your feelings. […] Trust yourself. […] Taking care of yourself is essential.

• #34 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  In these stages, the goals of care become comfort and hospice care can support these efforts. […] Caring for a person with FTD is an extremely difficult, frustrating, and often emotionally overwhelming journey. […] Acknowledge and manage your feelings. […] Trust yourself. […] Taking care of yourself is essential.

• #35 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  In these stages, the goals of care become comfort and hospice care can support these efforts. […] Caring for a person with FTD is an extremely difficult, frustrating, and often emotionally overwhelming journey. […] Acknowledge and manage your feelings. […] Trust yourself. […] Taking care of yourself is essential.

• #36 A Caregiver’s Guide to Frontotemporal Degeneration | Alzheimers.net

  https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

  Caregivers have so many challenges. It is critical to build a support network that expands beyond professionals to include family, friends and other community relationships and resources. […] Educate yourself about the disease and its progression. […] Understand what is happening to your family member this is the key to learning how to cope with the disease. […] Ask for help. […] Join a support group. […] Make use of respite resources. […] Take care of yourself. […] What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimers dementias. […] The emotional, physical, and logistical challenges of managing daily care are impossible for anyone to handle alone. Those who choose to accept assistance will be more effective and satisfied caregivers.

• #37 A Caregiver’s Guide to Frontotemporal Degeneration | Alzheimers.net

  https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

  Caregivers have so many challenges. It is critical to build a support network that expands beyond professionals to include family, friends and other community relationships and resources. […] Educate yourself about the disease and its progression. […] Understand what is happening to your family member this is the key to learning how to cope with the disease. […] Ask for help. […] Join a support group. […] Make use of respite resources. […] Take care of yourself. […] What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimers dementias. […] The emotional, physical, and logistical challenges of managing daily care are impossible for anyone to handle alone. Those who choose to accept assistance will be more effective and satisfied caregivers.

• #38 A Caregiver’s Guide to Frontotemporal Degeneration | Alzheimers.net

  https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

  Caregivers have so many challenges. It is critical to build a support network that expands beyond professionals to include family, friends and other community relationships and resources. […] Educate yourself about the disease and its progression. […] Understand what is happening to your family member this is the key to learning how to cope with the disease. […] Ask for help. […] Join a support group. […] Make use of respite resources. […] Take care of yourself. […] What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimers dementias. […] The emotional, physical, and logistical challenges of managing daily care are impossible for anyone to handle alone. Those who choose to accept assistance will be more effective and satisfied caregivers.

• #39 A Caregiver’s Guide to Frontotemporal Degeneration | Alzheimers.net

  https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

  Caregivers have so many challenges. It is critical to build a support network that expands beyond professionals to include family, friends and other community relationships and resources. […] Educate yourself about the disease and its progression. […] Understand what is happening to your family member this is the key to learning how to cope with the disease. […] Ask for help. […] Join a support group. […] Make use of respite resources. […] Take care of yourself. […] What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimers dementias. […] The emotional, physical, and logistical challenges of managing daily care are impossible for anyone to handle alone. Those who choose to accept assistance will be more effective and satisfied caregivers.

• #40 A Caregiver’s Guide to Frontotemporal Degeneration | Alzheimers.net

  https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

  Caregivers have so many challenges. It is critical to build a support network that expands beyond professionals to include family, friends and other community relationships and resources. […] Educate yourself about the disease and its progression. […] Understand what is happening to your family member this is the key to learning how to cope with the disease. […] Ask for help. […] Join a support group. […] Make use of respite resources. […] Take care of yourself. […] What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimers dementias. […] The emotional, physical, and logistical challenges of managing daily care are impossible for anyone to handle alone. Those who choose to accept assistance will be more effective and satisfied caregivers.

• #41 A Caregiver’s Guide to Frontotemporal Degeneration | Alzheimers.net

  https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

  Caregivers have so many challenges. It is critical to build a support network that expands beyond professionals to include family, friends and other community relationships and resources. […] Educate yourself about the disease and its progression. […] Understand what is happening to your family member this is the key to learning how to cope with the disease. […] Ask for help. […] Join a support group. […] Make use of respite resources. […] Take care of yourself. […] What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimers dementias. […] The emotional, physical, and logistical challenges of managing daily care are impossible for anyone to handle alone. Those who choose to accept assistance will be more effective and satisfied caregivers.

• #42 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  There is currently no cure for frontotemporal dementia (FTD) and its progression cannot be slowed down by medicines. However there are many ways to help a person with FTD live with a diagnosis. […] Supporting a person with FTD often involves a team of professionals that can include a GP, psychiatrist, neurologist, speech and language therapist, community nurse, and social worker. […] Support groups offer useful advice and emotional support to people living with FTD and those who care for them. […] It is common to feel awkward or embarrassed in these situations. However, it is important to remember that a person with FTD has little control over these actions. […] Understanding why a person’s behaviour has changed may help carers support them better. Physical exercise, music or other activities that the person enjoys or finds useful are also very helpful.

• #43 Frontotemporal Dementia: A Review for Primary Care Physicians | AAFP

  https://www.aafp.org/pubs/afp/issues/2010/1201/p1372.html

  Patients with aggressive behavior or outbursts may respond to small doses of antipsychotics; however, the benefits and risks associated with potential adverse effects must be considered. […] Primary care physicians may want to seek guidance from neurologists or other subspecialists, such as psychiatrists, to assist with treatment-refractory FTD or to identify the optimal medication regimen to alleviate symptoms. […] Because of the intense emotional and resource requirements of families and caregivers of patients with FTD, it is important that their needs are also met. Support groups for families and caregivers are important, and their use should not be delayed until the late stages of FTD.

• #44 Course Content – #96103: Frontotemporal Dementia – NetCE

  https://www.netce.com/coursecontent.php?courseid=2910

  Frontotemporal dementia (FTD) is a group of degenerative brain disorders characterized by behavior and language problems and also overlapping with some motor/movement diseases. […] There is presently no effective treatment for FTD, and symptom management can be challenging for healthcare providers and family caregivers. […] Management of FTD includes providing care to patients with FTD and support to their families. Caring for a person with FTD involves managing the symptoms, keeping the patient safe, and providing help in activities of daily living. […] Nurses play an important role in caring for those with FTD and providing support to their families. Nurses interact with patients with FTD and their families in the outpatient clinic setting, in-home care setting, and long-term care facility and may be involved in monitoring symptoms, developing and implementing individualized patient care plans, and providing direct patient care.

• #45 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  There is a wide array of community services that can assist you with managing daily care. You may not need them at the moment, or at all, but becoming familiar with these resources now will make transitions in care easier. […] For many families, there comes a time when it becomes necessary to move a loved one with FTD into a facility. This can be a difficult transition to consider, but in many situations the facility may offer both the person with FTD and their care partners the best possible quality of life. […] Because the disease will progress, caregivers must plan ahead and periodically reassess how best to provide care for their loved one and meet their own needs over the course of the illness. The decision to move into a facility is an emotionally and logistically complex one. […] Across all levels of care, the placement is more likely to succeed when family members develop a partnership with the facility staff and administration to work together in providing quality patient care. Frontotemporal degeneration is still unfamiliar to many facility providers. Be prepared to educate, advocate, and show how you will be a member of the team as everyone involved shares the goal of providing the best possible care.

• #46 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  There is a wide array of community services that can assist you with managing daily care. You may not need them at the moment, or at all, but becoming familiar with these resources now will make transitions in care easier. […] For many families, there comes a time when it becomes necessary to move a loved one with FTD into a facility. This can be a difficult transition to consider, but in many situations the facility may offer both the person with FTD and their care partners the best possible quality of life. […] Because the disease will progress, caregivers must plan ahead and periodically reassess how best to provide care for their loved one and meet their own needs over the course of the illness. The decision to move into a facility is an emotionally and logistically complex one. […] Across all levels of care, the placement is more likely to succeed when family members develop a partnership with the facility staff and administration to work together in providing quality patient care. Frontotemporal degeneration is still unfamiliar to many facility providers. Be prepared to educate, advocate, and show how you will be a member of the team as everyone involved shares the goal of providing the best possible care.

• #47 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  There is a wide array of community services that can assist you with managing daily care. You may not need them at the moment, or at all, but becoming familiar with these resources now will make transitions in care easier. […] For many families, there comes a time when it becomes necessary to move a loved one with FTD into a facility. This can be a difficult transition to consider, but in many situations the facility may offer both the person with FTD and their care partners the best possible quality of life. […] Because the disease will progress, caregivers must plan ahead and periodically reassess how best to provide care for their loved one and meet their own needs over the course of the illness. The decision to move into a facility is an emotionally and logistically complex one. […] Across all levels of care, the placement is more likely to succeed when family members develop a partnership with the facility staff and administration to work together in providing quality patient care. Frontotemporal degeneration is still unfamiliar to many facility providers. Be prepared to educate, advocate, and show how you will be a member of the team as everyone involved shares the goal of providing the best possible care.

• #48 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  Making the transition to a residential care facility is difficult under normal circumstances, but the challenges are compounded when FTD is involved. The change in environment can make people with FTD feel frustrated, angry, and uncomfortable. […] Even though the family has shifted the responsibility of day-to-day care over to the facility, it is important to remain an active partner with the staff to ensure the right approach and best care for a loved one. Remember that the knowledge that family caregivers have is tremendously valuable to facility staff.

• #49 Coordinating Care for Someone with Frontotemporal Degeneration | AFTD

  https://www.theaftd.org/living-with-ftd/coordinating-care/

  Making the transition to a residential care facility is difficult under normal circumstances, but the challenges are compounded when FTD is involved. The change in environment can make people with FTD feel frustrated, angry, and uncomfortable. […] Even though the family has shifted the responsibility of day-to-day care over to the facility, it is important to remain an active partner with the staff to ensure the right approach and best care for a loved one. Remember that the knowledge that family caregivers have is tremendously valuable to facility staff.

• #50 Caring for a Person With a Frontotemporal Disorder | National Institute on Aging

  https://www.nia.nih.gov/health/frontotemporal-disorders/caring-person-frontotemporal-disorder

  For many caregivers, there comes a point when they can no longer take care of the person with FTD without professional help. The caregiving demands are simply too great, and the person may need around-the-clock care. […] The decision to move the person with FTD to a care facility can be difficult, but it can also give caregivers peace of mind to know that the person is safe and getting good care. […] It is difficult, but important, to plan for the end of life. Legal documents, such as a will, living will, and durable powers of attorney for health care and finances, should be created or updated as soon as possible after a diagnosis of FTD or a related disorder.

• #51

  https://www.nhs.uk/conditions/frontotemporal-dementia/treatment/

  There’s currently no cure for frontotemporal dementia, but there are treatments that can help manage some of the symptoms. […] Before treatment starts, your current and future health and social care needs will be assessed, and a care plan drawn up. […] This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance. […] Medicines cannot stop frontotemporal dementia getting worse, but it can help reduce some of the symptoms for some people. […] In addition to medicines, there are a number of therapies and practical measures that can help make everyday living easier for someone with dementia. […] If you’ve been diagnosed with dementia, you might want to make arrangements for your care that take into account the decline in your mental abilities. […] If you care for someone with dementia, you may find it helpful to read more about: Looking after someone with dementia.

• #52 What Is Frontotemporal Dementia?

  https://www.alzheimers.gov/alzheimers-dementias/frontotemporal-dementia

  Frontotemporal dementia is caused by a group of disorders that gradually damage the brains frontal and temporal lobes. These damages cause changes in thinking and behaviors. Symptoms can include unusual behaviors, emotional problems, trouble communicating, challenges with work, and difficulty with walking. […] High levels of care, such as 24-hour care, may be needed over time. Once the person is diagnosed, it is important to plan ahead for financial, legal, and care arrangements that may be needed as the disease progresses. […] There is no cure for frontotemporal dementia and no way to slow down or prevent it. However, there are ways to help manage symptoms: Maintain a schedule, decrease distractions, and change the environment to help with behavioral issues. For example, if compulsive eating is an issue, consider limiting food choices, locking cabinets and the refrigerator, and distracting the person with other activities.

• #53 Frontotemporal dementia: MedlinePlus Medical EncyclopediaLock

  https://medlineplus.gov/ency/article/000744.htm

  Frontotemporal dementia (FTD) is a rare form of dementia that is similar to Alzheimer disease, except that it tends to affect only certain areas of the brain. […] There is no specific treatment for FTD. Medicines may help manage mood swings. […] Depending on the symptoms and severity of the disease, monitoring and help with personal hygiene and self-care may be needed. Eventually, there may be a need for 24-hour care and monitoring at home or in a special facility. Family counseling can help the person cope with the changes needed for home care. […] People with FTD and their family may need to seek legal advice early in the course of the disorder. Advance care directive, power of attorney, and other legal actions can make it easier to make decisions regarding the care of the person with FTD.

• #54 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #55 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  In these stages, the goals of care become comfort and hospice care can support these efforts. […] Caring for a person with FTD is an extremely difficult, frustrating, and often emotionally overwhelming journey. […] Acknowledge and manage your feelings. […] Trust yourself. […] Taking care of yourself is essential.

• #56 What Is Frontotemporal Dementia?

  https://www.alzheimers.gov/alzheimers-dementias/frontotemporal-dementia

  Frontotemporal dementia is caused by a group of disorders that gradually damage the brains frontal and temporal lobes. These damages cause changes in thinking and behaviors. Symptoms can include unusual behaviors, emotional problems, trouble communicating, challenges with work, and difficulty with walking. […] High levels of care, such as 24-hour care, may be needed over time. Once the person is diagnosed, it is important to plan ahead for financial, legal, and care arrangements that may be needed as the disease progresses. […] There is no cure for frontotemporal dementia and no way to slow down or prevent it. However, there are ways to help manage symptoms: Maintain a schedule, decrease distractions, and change the environment to help with behavioral issues. For example, if compulsive eating is an issue, consider limiting food choices, locking cabinets and the refrigerator, and distracting the person with other activities.

• #57

  https://www.nhs.uk/conditions/frontotemporal-dementia/

  Frontotemporal dementia is an uncommon type of dementia that causes problems with behaviour and language. […] These problems can make daily activities increasingly difficult, and the person may eventually be unable to look after themselves. […] Home-based help will usually be needed at some stage, and some people will eventually need care in a nursing home. […] 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. […] Dementia and care homes.

• #58 Frontotemporal dementia (FTD) | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotemporal-dementia

  Most people with behavioural variant FTD are not fully aware of their symptoms. Instead, these changes are often first noticed by the people who are closest to them. […] This can all be very stressful for family members and carers particularly when someone goes for several years without an accurate diagnosis. It can strain personal relationships. […] At this late stage, they are also likely to need full-time care to meet their daily needs, such as eating, drinking, washing, dressing and going to the toilet. At some point, they may need to be cared for in a residential care home. […] Finding a suitable care home when someone is younger and has an unusual type of dementia can be hard. You may need to look over a wider area to find somewhere that’s right for them.

• #59 Frontotemporal dementia (FTD) | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotemporal-dementia

  Most people with behavioural variant FTD are not fully aware of their symptoms. Instead, these changes are often first noticed by the people who are closest to them. […] This can all be very stressful for family members and carers particularly when someone goes for several years without an accurate diagnosis. It can strain personal relationships. […] At this late stage, they are also likely to need full-time care to meet their daily needs, such as eating, drinking, washing, dressing and going to the toilet. At some point, they may need to be cared for in a residential care home. […] Finding a suitable care home when someone is younger and has an unusual type of dementia can be hard. You may need to look over a wider area to find somewhere that’s right for them.

• #60 Frontotemporal Dementia: A Review for Primary Care Physicians | AAFP

  https://www.aafp.org/pubs/afp/issues/2010/1201/p1372.html

  Frontotemporal dementia (FTD) is one of the most common forms of dementia in persons younger than 65 years. […] Primary care physicians have a critical role in identifying patients with FTD and assembling an interdisciplinary team to care for patients with FTD, their families, and caregivers. […] Primary care physicians are well positioned to suspect and diagnose FTD, and to provide the appropriate assistance and resources. In addition, primary care physicians are integral in coordinating an appropriate interdisciplinary team to manage FTD. […] There is no specific cure for FTD; treatment is focused on symptom management and support for patients, families, and caregivers. […] Selective serotonin reuptake inhibitors are commonly used and may be beneficial for behavioral symptoms, including disinhibition, depressive symptoms, and repetitive behaviors.

• #61 Frontotemporal Dementia: A Review for Primary Care Physicians | AAFP

  https://www.aafp.org/pubs/afp/issues/2010/1201/p1372.html

  Frontotemporal dementia (FTD) is one of the most common forms of dementia in persons younger than 65 years. […] Primary care physicians have a critical role in identifying patients with FTD and assembling an interdisciplinary team to care for patients with FTD, their families, and caregivers. […] Primary care physicians are well positioned to suspect and diagnose FTD, and to provide the appropriate assistance and resources. In addition, primary care physicians are integral in coordinating an appropriate interdisciplinary team to manage FTD. […] There is no specific cure for FTD; treatment is focused on symptom management and support for patients, families, and caregivers. […] Selective serotonin reuptake inhibitors are commonly used and may be beneficial for behavioral symptoms, including disinhibition, depressive symptoms, and repetitive behaviors.

• #62 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  There is currently no cure for frontotemporal dementia (FTD) and its progression cannot be slowed down by medicines. However there are many ways to help a person with FTD live with a diagnosis. […] Supporting a person with FTD often involves a team of professionals that can include a GP, psychiatrist, neurologist, speech and language therapist, community nurse, and social worker. […] Support groups offer useful advice and emotional support to people living with FTD and those who care for them. […] It is common to feel awkward or embarrassed in these situations. However, it is important to remember that a person with FTD has little control over these actions. […] Understanding why a person’s behaviour has changed may help carers support them better. Physical exercise, music or other activities that the person enjoys or finds useful are also very helpful.

• #63 Advanced Practice Nursing: Meeting the Caregiving Challenges for Families of Persons with Frontotemporal Dementia

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2943420/

  The decreased empathy, distractibility, and poor working memory found in bvFTD can make communication with the patient very difficult. While the ability to speak may not be as affected in some patients, caregivers often report a lack of emotional connectedness and awareness in patients with bvFTD. […] As apathy increases in the later stages of the illness, the physical care needs often become more intense. Caregivers have described the difficulties in finding placement in long term care (LTC) facilities that are reluctant to accept younger patients exhibiting social and personal misconduct. […] For many caregivers, the demands of the patient make it difficult to pay attention to their own physical and emotional health. Caregivers may forego their own medical appointments and check-ups. Caregivers need practical help and advice regarding caregiving issues as well as emotional support. […] APNs, with expert knowledge about FTD and the ability to organize and implement educational, supportive, and management strategies throughout the disease trajectory, are in an excellent position to assist FTD families.

• #64 Advanced Practice Nursing: Meeting the Caregiving Challenges for Families of Persons with Frontotemporal Dementia

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2943420/

  Families often relate the difficulties in obtaining a correct diagnosis for patients exhibiting changes in behavior and personality. These symptoms are often mistakenly attributed to depression, mid-life concerns, marital conflict, and other psychiatric conditions. […] An APN familiar with atypical dementias can be a valuable resource to families in finding the providers and centers more familiar with these conditions. A referral to a specialty clinic or center can reap benefits to the patients and families in clarifying the clinical symptoms and providing a framework for future planning and decision-making. […] Dementia leads to deficits in functional abilities. These functions are classically divided into two categories. The first are called instrumental activities and refer to complex tasks such as bill paying, working, shopping, driving, managing appointments, and packing for a trip, etc. The second category refers to basic activities such as eating, bathing, dressing, and using the bathroom. The ability to engage in complex activities is typically affected earliest in dementia.

• #65 Advanced Practice Nursing: Meeting the Caregiving Challenges for Families of Persons with Frontotemporal Dementia

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2943420/

  The decreased empathy, distractibility, and poor working memory found in bvFTD can make communication with the patient very difficult. While the ability to speak may not be as affected in some patients, caregivers often report a lack of emotional connectedness and awareness in patients with bvFTD. […] As apathy increases in the later stages of the illness, the physical care needs often become more intense. Caregivers have described the difficulties in finding placement in long term care (LTC) facilities that are reluctant to accept younger patients exhibiting social and personal misconduct. […] For many caregivers, the demands of the patient make it difficult to pay attention to their own physical and emotional health. Caregivers may forego their own medical appointments and check-ups. Caregivers need practical help and advice regarding caregiving issues as well as emotional support. […] APNs, with expert knowledge about FTD and the ability to organize and implement educational, supportive, and management strategies throughout the disease trajectory, are in an excellent position to assist FTD families.

• #66 Course Content – #96103: Frontotemporal Dementia – NetCE

  https://www.netce.com/coursecontent.php?courseid=2910

  Frontotemporal dementia (FTD) is a group of degenerative brain disorders characterized by behavior and language problems and also overlapping with some motor/movement diseases. […] There is presently no effective treatment for FTD, and symptom management can be challenging for healthcare providers and family caregivers. […] Management of FTD includes providing care to patients with FTD and support to their families. Caring for a person with FTD involves managing the symptoms, keeping the patient safe, and providing help in activities of daily living. […] Nurses play an important role in caring for those with FTD and providing support to their families. Nurses interact with patients with FTD and their families in the outpatient clinic setting, in-home care setting, and long-term care facility and may be involved in monitoring symptoms, developing and implementing individualized patient care plans, and providing direct patient care.

• #67 Course Content – #96103: Frontotemporal Dementia – NetCE

  https://www.netce.com/coursecontent.php?courseid=2910

  The demands on caregivers increase as FTD progresses. Caregivers will be required to provide more supervision and increasing assistance for activities of daily living. […] Family caregivers should be encouraged to ask for and accept help in caring for their loved one with FTD, allowing them to take time for themselves and address their own health needs. […] It is important for all healthcare providers to coordinate care for the patient with FTD. All members of the interdisciplinary healthcare team can support families by listening to them, providing ongoing information and education about FTD, offering guidance to improve caregiving skills, and helping families connect to appropriate resources.

• #68 What Is Frontotemporal Dementia?

  https://www.alzheimers.gov/alzheimers-dementias/frontotemporal-dementia

  Frontotemporal dementia is caused by a group of disorders that gradually damage the brains frontal and temporal lobes. These damages cause changes in thinking and behaviors. Symptoms can include unusual behaviors, emotional problems, trouble communicating, challenges with work, and difficulty with walking. […] High levels of care, such as 24-hour care, may be needed over time. Once the person is diagnosed, it is important to plan ahead for financial, legal, and care arrangements that may be needed as the disease progresses. […] There is no cure for frontotemporal dementia and no way to slow down or prevent it. However, there are ways to help manage symptoms: Maintain a schedule, decrease distractions, and change the environment to help with behavioral issues. For example, if compulsive eating is an issue, consider limiting food choices, locking cabinets and the refrigerator, and distracting the person with other activities.

• #69 Frontotemporal dementia – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/diagnosis-treatment/drc-20354741

  Our caring team of Mayo Clinic experts can help you with your frontotemporal dementia-related health concerns […] As frontotemporal dementia symptoms get worse, you’ll need the help of caregivers. Caregivers can help you with daily activities, help maintain your safety, provide transportation and help with finances. […] Caregivers may be able to address behavioral symptoms by changing the way they interact with people with dementia. Ask your loved one’s healthcare professional about resources that provide training in caring for someone with dementia. […] Caring for someone with frontotemporal dementia can be challenging because FTD can cause extreme personality changes and behavioral symptoms. It may be helpful to educate others about behavioral symptoms and what they can expect when spending time with your loved one.

• #70 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  There is currently no cure for frontotemporal dementia (FTD) and its progression cannot be slowed down by medicines. However there are many ways to help a person with FTD live with a diagnosis. […] Supporting a person with FTD often involves a team of professionals that can include a GP, psychiatrist, neurologist, speech and language therapist, community nurse, and social worker. […] Support groups offer useful advice and emotional support to people living with FTD and those who care for them. […] It is common to feel awkward or embarrassed in these situations. However, it is important to remember that a person with FTD has little control over these actions. […] Understanding why a person’s behaviour has changed may help carers support them better. Physical exercise, music or other activities that the person enjoys or finds useful are also very helpful.

• #71 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  These activities are often the most effective way of helping a person with FTD to maintain a good quality of life. It is important to try this before considering treatments with medicines. […] Speech and language therapy can make a big difference for someone with a language-led dementia. […] It’s important to try to access speech and language therapy as soon as possible rather than waiting for a crisis, such as the loss of an essential communication skill.

• #72 Course Content – #96103: Frontotemporal Dementia – NetCE

  https://www.netce.com/coursecontent.php?courseid=2910

  The demands on caregivers increase as FTD progresses. Caregivers will be required to provide more supervision and increasing assistance for activities of daily living. […] Family caregivers should be encouraged to ask for and accept help in caring for their loved one with FTD, allowing them to take time for themselves and address their own health needs. […] It is important for all healthcare providers to coordinate care for the patient with FTD. All members of the interdisciplinary healthcare team can support families by listening to them, providing ongoing information and education about FTD, offering guidance to improve caregiving skills, and helping families connect to appropriate resources.

• #73 Course Content – #96103: Frontotemporal Dementia – NetCE

  https://www.netce.com/coursecontent.php?courseid=2910

  The demands on caregivers increase as FTD progresses. Caregivers will be required to provide more supervision and increasing assistance for activities of daily living. […] Family caregivers should be encouraged to ask for and accept help in caring for their loved one with FTD, allowing them to take time for themselves and address their own health needs. […] It is important for all healthcare providers to coordinate care for the patient with FTD. All members of the interdisciplinary healthcare team can support families by listening to them, providing ongoing information and education about FTD, offering guidance to improve caregiving skills, and helping families connect to appropriate resources.

• #74 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #75 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #76 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  Although there are currently no disease-modifying treatments available for FTD, there are resources to learn how to best approach common symptoms in FTD, reduce stress and promote quality of life. […] FTD Support groups offer an emotionally supportive environment in which to discuss care challenges and approaches. […] Building a care team of professionals, friends and family can help support changes that can occur throughout the journey. […] AFTD is here to guide you by offering the best information available to learn how to navigate common challenges in FTD as part of a person-centered plan that considers the person’s individual needs, history, and goals. […] It is important for people with FTD to stay engaged in enjoyable, meaningful and stimulating activities of their choosing as long as they are able and it is safe to do so.

• #77 Frontotemporal Dementia (FTD) | Symptoms & Treatments | alz.org

  https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia

  Frontotemporal dementia (FTD) or frontotemporal degeneration refers to a group of disorders caused by progressive nerve cell loss in the brain’s frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears). […] The nerve cell damage caused by frontotemporal dementia leads to loss of function in these brain regions, which variably cause deterioration in behavior, personality and/or difficulty with producing or comprehending language. […] There are no specific treatments for any of the frontotemporal subtypes. There are medications that can reduce agitation, irritability and/or depression. These treatments should be used to help improve quality of life. […] Frontotemporal dementia inevitably gets worse over time and the speed of decline differs from person to person. For many years, individuals with frontotemporal dementia show muscle weakness and coordination problems, leaving them needing a wheelchair or unable to leave the bed. These muscle issues can cause problems swallowing, chewing, moving and controlling bladder and/or bowels. Eventually, people with frontotemporal degeneration die because of the physical changes that can cause skin, urinary tract and/or lung infections. […] The Association for Frontotemporal Degeneration (AFTD) is a nonprofit organization that provides information, education and support to those affected by frontotemporal dementia and their caregivers.

• #78 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #79 What Is Frontotemporal Dementia?

  https://www.alzheimers.gov/alzheimers-dementias/frontotemporal-dementia

  Support groups can also be a valuable resource for people with frontotemporal dementias and their caregivers, allowing them to share experiences and tips with others who may be in the same situation. Nonprofit organizations and community organizations may provide online or in-person support groups. Alzheimers Disease Research Centers may also offer education and support groups.

• #80 Frontotemporal Dementia | University Hospitals

  https://www.uhhospitals.org/health-information/health-and-wellness-library/article/diseases-and-conditions/frontotemporal-dementia-1

  Frontotemporal dementia (FTD) is a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost. This causes the lobes to shrink. […] FTD can affect behavior, personality, language, and movement. […] At this time, no treatments can cure or slow the FTD getting worse. But your healthcare providers may suggest the following to help treat symptoms: […] Involvement of family members in treatment approaches to help support you and manage symptoms. […] As FTD gets worse, people may take part in unsafe behaviors. Or they may be unable to care for themselves. They may need 24-hour nursing care or to stay in an assisted living facility or nursing home. […] Caregivers should learn all they can about FTD. They should look for a healthcare provider who knows about it, too.

• #81 Frontotemporal Dementia | University Hospitals

  https://www.uhhospitals.org/health-information/health-and-wellness-library/article/diseases-and-conditions/frontotemporal-dementia-1

  Social workers and nurse case managers can also help. They can help the patient and caregivers find community resources. This includes medical supplies and equipment, nursing care, support groups, respite care, and financial help. […] If you have FTD, you may eventually need full-time nursing care, or to stay in an assisted-living facility or nursing home. […] If you have FTD, you will need ongoing resources to help you and your family manage the disease.

• #82 Understanding Frontotemporal Dementia (FTD) | UT Physicians

  https://www.utphysicians.com/part-1-understanding-frontotemporal-dementia-ftd/

  FTD is 20 years behind Alzheimer’s regarding trials, so its a tougher disorder now. We don’t have ways of affecting the underlying process, but I would argue we do make quality of life a lot better. Part of that is with medication. […] Watch for the next installment about frontotemporal dementia factors around heredity, messaging to families learning of a new FTD diagnosis, and best ways to support the patient with FTD as well as the caregivers.

• #83 Nursing care for people with frontal-lobe dementia – difficulties and possibilities | International Psychogeriatrics | Cambridge Core

  https://www.cambridge.org/core/journals/international-psychogeriatrics/article/nursing-care-for-people-with-frontallobe-dementia-difficulties-and-possibilities/835131AD063C428907EC3D42DAD2181C

  Background: Nursing care for people with dementia diseases affecting the frontal lobes places special demands on staff, but there is little information available about how best to tailor nursing care. The aim of this study was to describe nurses’ experience of difficulties and possibilities in caring for people with dementia diseases with frontal-lobe dysfunction. […] The difficulties experienced were related to the patients’ lack of inhibition and judgment, anxiety, agitation, reduced ability to deal with physical needs, egocentricity, imbalance between rest and activity and depressed mood. The possibilities were seen in relation to the nursing staff’s professional encounters, characterized as being clear and consistent, a step ahead, flexible, calm and creating a positive atmosphere, close and trusting and being and doing things together. Continuous feedback and support were prerequisites for the engagement of the staff.

• #84 Nursing care for people with frontal-lobe dementia – difficulties and possibilities | International Psychogeriatrics | Cambridge Core

  https://www.cambridge.org/core/journals/international-psychogeriatrics/article/nursing-care-for-people-with-frontallobe-dementia-difficulties-and-possibilities/835131AD063C428907EC3D42DAD2181C

  Background: Nursing care for people with dementia diseases affecting the frontal lobes places special demands on staff, but there is little information available about how best to tailor nursing care. The aim of this study was to describe nurses’ experience of difficulties and possibilities in caring for people with dementia diseases with frontal-lobe dysfunction. […] The difficulties experienced were related to the patients’ lack of inhibition and judgment, anxiety, agitation, reduced ability to deal with physical needs, egocentricity, imbalance between rest and activity and depressed mood. The possibilities were seen in relation to the nursing staff’s professional encounters, characterized as being clear and consistent, a step ahead, flexible, calm and creating a positive atmosphere, close and trusting and being and doing things together. Continuous feedback and support were prerequisites for the engagement of the staff.

• #85 Nursing care for people with frontal-lobe dementia – difficulties and possibilities | International Psychogeriatrics | Cambridge Core

  https://www.cambridge.org/core/journals/international-psychogeriatrics/article/nursing-care-for-people-with-frontallobe-dementia-difficulties-and-possibilities/835131AD063C428907EC3D42DAD2181C

  Nursing care in this context involves ethical issues whereby the residents’ integrity must be balanced against a safe and secure environment. Nursing care is a sensitive but also demanding task, where nurses’ actions can reduce the negative effects of the disease. It is therefore important to support staff in nursing care so they are able to manage their work and reduce the risk of emotional exhaustion.

• #86 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #87 Managing Care for Frontotemporal Degeneration (FTD) | AFTD

  https://www.theaftd.org/living-with-ftd/managing-ftd/

  As FTD progresses, adjustments need to be made based on the person’s abilities and goals. […] Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. […] Symptoms in FTD are the result of changes in the brain that the person with FTD can’t control or change. […] As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes. […] AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team. […] When FTD reaches its advanced stages, symptoms impact multiple domains of functioning and persons diagnosed become increasingly dependent on others for their daily needs.

• #88 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  There is currently no cure for frontotemporal dementia (FTD) and its progression cannot be slowed down by medicines. However there are many ways to help a person with FTD live with a diagnosis. […] Supporting a person with FTD often involves a team of professionals that can include a GP, psychiatrist, neurologist, speech and language therapist, community nurse, and social worker. […] Support groups offer useful advice and emotional support to people living with FTD and those who care for them. […] It is common to feel awkward or embarrassed in these situations. However, it is important to remember that a person with FTD has little control over these actions. […] Understanding why a person’s behaviour has changed may help carers support them better. Physical exercise, music or other activities that the person enjoys or finds useful are also very helpful.

• #89 Treatment and support for frontotemporal dementia | Alzheimer’s Society

  https://www.alzheimers.org.uk/about-dementia/types-dementia/treatment-support-frontotemporal-dementia

  There is currently no cure for frontotemporal dementia (FTD) and its progression cannot be slowed down by medicines. However there are many ways to help a person with FTD live with a diagnosis. […] Supporting a person with FTD often involves a team of professionals that can include a GP, psychiatrist, neurologist, speech and language therapist, community nurse, and social worker. […] Support groups offer useful advice and emotional support to people living with FTD and those who care for them. […] It is common to feel awkward or embarrassed in these situations. However, it is important to remember that a person with FTD has little control over these actions. […] Understanding why a person’s behaviour has changed may help carers support them better. Physical exercise, music or other activities that the person enjoys or finds useful are also very helpful.

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