Materiały źródłowe

• #1 Nursing Care for Huntington’s Disease – Straight A Nursing

  https://straightanursingstudent.com/huntingtons-disease/

  Huntington’s disease (HD) is a progressive neurodegenerative disorder that is caused by extra repeats of the cytosine-adenine-guanine (CAG) trinucleotide in the huntingtin gene. This leads to neuron dysfunction and death, mainly in the basal ganglia and cerebral cortex. […] As a progressive neurodegenerative disorder, individuals with late-stage HD usually are bedbound, nonverbal and require total care with ADLs. Complications include: […] Assessment of the patient with HD will vary based on the individual’s unique clinical course and progression of the disease. In general, assessments for a patient with HD will often be closely correlated with patient safety as these patients are at high risk for falls, aspiration, infection and suicidal ideation. […] It’s important to understand that since Huntington’s is not curable, care is focused on palliation (comfort), reducing symptoms, and preventing complications.

• #2 Huntington’s Chorea Nursing Management – RNpedia

  https://www.rnpedia.com/nursing-notes/medical-surgical-nursing-notes/huntingtons-chorea-nursing-management/

  Huntingtons disease (also called Huntingtons chorea) is a rare abnormal hereditary disorder of the CNS. It is characterized by chronic progressive chorea (involuntary purposeless, rapid movements) and mental deterioration that results in dementia. […] Although no treatments halts or reverse the underlying processes, several medications prescribed. […] Disease management includes rehabilitative therapy, teaching, counseling and professional legal, financial and estate planning advice. […] The nurse needs to educate and support the patient and family as they adjust to the lifestyle changes that are required. […] Regular moderate exercise can reduce stiffness and tremors. […] As the disease progresses, the patient and family will require more assistance with activities of daily living, emotional support, and potential financial concerns.

• #3 Nursing Care Plan For Huntington’s Disease  – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-huntingtons-disease/

  Huntingtons Disease (HD) is a complex and devastating neurodegenerative disorder characterized by progressive motor dysfunction, cognitive decline, and psychiatric symptoms. It is a hereditary condition caused by a genetic mutation, and its impact extends beyond the individual to affect families as well. Managing the multifaceted challenges presented by HD requires a comprehensive and compassionate nursing care plan. […] This care plan recognizes the profound physical, emotional, and social implications of HD. It aims to provide holistic care that addresses symptom management, emotional support, patient and family education, and end-of-life considerations. HD presents a unique set of challenges that evolve over time, making ongoing assessment and care adjustments crucial. […] By focusing on enhancing the quality of life, promoting dignity, and providing support throughout the disease trajectory, nurses play a crucial role in easing the burden of HD for both patients and their loved ones.

• #4 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Use the nursing process to develop a plan of care for individuals. The nursing assessment (with common findings listed), diagnoses, interventions, expected outcomes, and education for Huntingtons disease are listed below. […] A history and physical assessment for individuals with Huntingtons disease may show: […] Nursing Diagnosis/Risk For […] At risk for falls with injury related to gait disturbance, loss of musculoskeletal control as evidence by gait unsteady […] Altered nutrition less than body requirement related to constant movement, difficulty chewing and swallowing as evidence by weight loss […] At risk for aspiration related to dysphagia as evidence by difficulty swallowing […] Impaired communication related to difficult to understand speech […] Anxiety related to diagnosis as evidence by difficulty making wants and needs known, and disease process

• #5 Nursing Care for Huntington’s Disease – Straight A Nursing

  https://straightanursingstudent.com/huntingtons-disease/

  Huntington’s disease (HD) is a progressive neurodegenerative disorder that is caused by extra repeats of the cytosine-adenine-guanine (CAG) trinucleotide in the huntingtin gene. This leads to neuron dysfunction and death, mainly in the basal ganglia and cerebral cortex. […] As a progressive neurodegenerative disorder, individuals with late-stage HD usually are bedbound, nonverbal and require total care with ADLs. Complications include: […] Assessment of the patient with HD will vary based on the individual’s unique clinical course and progression of the disease. In general, assessments for a patient with HD will often be closely correlated with patient safety as these patients are at high risk for falls, aspiration, infection and suicidal ideation. […] It’s important to understand that since Huntington’s is not curable, care is focused on palliation (comfort), reducing symptoms, and preventing complications.

• #6 FF #201 Palliative Care for Patients with Huntington’s Disease | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-huntingtons-disease/

  Impact on Families HD often begins during a time when family life is most complex and therefore most disruptive to the family structure (e.g. child-rearing, career development). Children can be particularly affected: distress is aggravated by concerns about their own genetic susceptibility, and as many as 40% of children of HD patients describe HD as splitting their family apart. Careful assessments of familial coping and psychosocial needs are an integral part of ongoing care for the HD patient. […] Common Symptoms and Supportive Care Patients are best served by an interdisciplinary team familiar with caring for patients with HD. Motor Manifestations. Abnormal involuntary movements include: chorea, dystonia, rigidity, bradykinesia, tremor, and myoclonus; other motor manifestations include gait and balance problems leading to frequent falls, slurred speech and swallowing difficulties. First-line strategies are non-pharmacologic and include gait/balance training, speech therapy, and orthotics and leg weights to assist with upright posture. Chorea is the most frequently targeted symptom for pharmacologic therapy. Tetrabenazine (a dopamine depleting agent) has been shown to reduce chorea in a well-designed placebo controlled trial; it is undergoing approval in the US. Haloperidol and other antipsychotics are also used for chorea, although trials evaluating their effectiveness have shown mixed results. Psychiatric manifestations are present in over half of HD patients. Depression is a significant psychiatric problem and rates of suicide are higher in HD patients than the general population. Case reports support using tricyclic as well as newer antidepressants. Agitation is also common, and a small number of patients develop psychosis. Atypical neuroleptics are commonly used. Emotional lability (including episodes of extreme anger) can respond to propranolol. Low doses of scheduled benzodiazepines before meals or propranolol are used to control motor manifestations and anxiety related to eating. Establishing strict daily and hourly routines can help lessen anxiety, short-term memory deficits, intrusive thoughts, and fear of abandonment. Cognitive Deficits: gradual loss of memory and executive function are common. Consequently, increasing impairments in initiating movements and conversation occur. Yes/no questions may be preferable over open-ended questions when cognitive impairments become severe.

• #7 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Use the nursing process to develop a plan of care for individuals. The nursing assessment (with common findings listed), diagnoses, interventions, expected outcomes, and education for Huntingtons disease are listed below. […] A history and physical assessment for individuals with Huntingtons disease may show: […] Nursing Diagnosis/Risk For […] At risk for falls with injury related to gait disturbance, loss of musculoskeletal control as evidence by gait unsteady […] Altered nutrition less than body requirement related to constant movement, difficulty chewing and swallowing as evidence by weight loss […] At risk for aspiration related to dysphagia as evidence by difficulty swallowing […] Impaired communication related to difficult to understand speech […] Anxiety related to diagnosis as evidence by difficulty making wants and needs known, and disease process

• #8 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  The neurological disease can make it hard for individuals to take care of themselves. A family member has just been diagnosed with Huntingtons disease. And you’re the primary caregiver. It can be an overwhelming time full of changes and transitions for both you as the caregiver and for the person diagnosed with Huntingtons disease. The genetic disease, which attacks your brain and can cause unsteady and uncontrollable movements in your hands, feet and face, can make simple, everyday tasks difficult. Huntingtons disease will make it harder for individuals to move about their homes with ease and without supervision, too. […] Being the primary caregiver for anyone with a disability or medical condition can be a huge undertaking. You need to consider their emotional, physical and social needs. With Huntingtons disease, there are three different stages of the disease early, middle and end stages all of which come with different symptoms and care needs. It’s important to remember that at times, your loved one won’t be able to control their thoughts and actions. So, it’s important to have patience and understanding. Make sure you as the caregiver recognize that some of the things that they’re doing aren’t out of malice. It’s because of their condition, says Nicka. It’s on par with someone who has a memory impairment.

• #9 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Use the nursing process to develop a plan of care for individuals. The nursing assessment (with common findings listed), diagnoses, interventions, expected outcomes, and education for Huntingtons disease are listed below. […] A history and physical assessment for individuals with Huntingtons disease may show: […] Nursing Diagnosis/Risk For […] At risk for falls with injury related to gait disturbance, loss of musculoskeletal control as evidence by gait unsteady […] Altered nutrition less than body requirement related to constant movement, difficulty chewing and swallowing as evidence by weight loss […] At risk for aspiration related to dysphagia as evidence by difficulty swallowing […] Impaired communication related to difficult to understand speech […] Anxiety related to diagnosis as evidence by difficulty making wants and needs known, and disease process

• #10 Huntington’s Disease Assessment and Interventions for Nursing RN

  https://www.picmonic.com/pathways/nursing/courses/standard/medical-surgical-nursing-pathophysiology-296/central-nervous-system-disorders-1438/huntingtons-disease-assessment-and-interventions_1739

  Huntington’s disease causes choreic movements that increase the patient’s caloric requirements. In order to maintain body weight, the patient may need up to 5000 calories/day. As the disease progresses, maintaining nutritional requirements may necessitate a switch to pureed foods or thickened liquid diets since patients may have increased difficulty swallowing.

• #11 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  The daily needs of a person living with Huntingtons disease changes overtime. During the first stage, they might need help adjusting to their new normal. This can include talking about their fears and concerns. As the disease progresses, they’ll need help with daily tasks like going to appointments, taking their medications and making meals. As a caregiver, you need to make sure that they’re able to get the help they need, says Nicka. […] People with Huntingtons disease are more at risk for falls and other accidents. As the caregiver, you should do an assessment of their living space and identify any potential hazards. […] During the early and middle stages, moderate support is needed. But as the disease progresses, their needs will become greater. If your loved one can’t live on their own or take care of themselves, then you’ll need to decide whether to support them with in-home care or whether full-time care at a healthcare facility is necessary. People can stay at home in the end stage, but they will need a lot more support from family because it’s quite a bit to be asked of one care provider, says Nicka.

• #12 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Disturbed thought process related to disease process as evidence by depression, memory problems, confusion, emotional changes, and insomnia […] At risk for skin breakdown related to constant movement, chorea, and incontinence […] Self-care deficit related to depression, memory problems, chorea as evidence by requires assistance with activities of daily living. […] Interventions […] Keep skin clean and dry […] Assist with ambulation and transfers […] Assist the individual in sitting up during meals […] Monitor for choking and coughing during meals […] Actively listen to feelings and concerns […] Assess for potential suicide risk and suicidal ideation […] Speech, physical, and occupational therapy referrals […] Attempt to anticipate needs […] Ask yes or no questions when appropriate

• #13 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Use the nursing process to develop a plan of care for individuals. The nursing assessment (with common findings listed), diagnoses, interventions, expected outcomes, and education for Huntingtons disease are listed below. […] A history and physical assessment for individuals with Huntingtons disease may show: […] Nursing Diagnosis/Risk For […] At risk for falls with injury related to gait disturbance, loss of musculoskeletal control as evidence by gait unsteady […] Altered nutrition less than body requirement related to constant movement, difficulty chewing and swallowing as evidence by weight loss […] At risk for aspiration related to dysphagia as evidence by difficulty swallowing […] Impaired communication related to difficult to understand speech […] Anxiety related to diagnosis as evidence by difficulty making wants and needs known, and disease process

• #14 Nursing Care Plan For Huntington’s Disease  – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-huntingtons-disease/

  A comprehensive nursing assessment for HD enables healthcare providers to tailor care to the patients unique needs, provide effective treatment and support, and address both the physical and psychosocial aspects of HD. It serves as a foundation for developing a person-centered care plan and improving the patients quality of life throughout the disease trajectory. […] Nursing diagnoses for HD guide the development of individualized care plans that address the physical, psychological, and social needs of patients and their caregivers. By identifying specific nursing diagnoses and related rationales, healthcare providers can formulate interventions aimed at improving the patients overall well-being and optimizing their quality of life throughout the disease trajectory. […] Nursing interventions for Huntingtons Disease aim to enhance the patients quality of life, manage symptoms, and provide support to both the individual with HD and their caregivers. These interventions should be tailored to the unique needs and stage of the disease for each patient to optimize care and promote dignity throughout the HD journey.

• #15 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Disturbed thought process related to disease process as evidence by depression, memory problems, confusion, emotional changes, and insomnia […] At risk for skin breakdown related to constant movement, chorea, and incontinence […] Self-care deficit related to depression, memory problems, chorea as evidence by requires assistance with activities of daily living. […] Interventions […] Keep skin clean and dry […] Assist with ambulation and transfers […] Assist the individual in sitting up during meals […] Monitor for choking and coughing during meals […] Actively listen to feelings and concerns […] Assess for potential suicide risk and suicidal ideation […] Speech, physical, and occupational therapy referrals […] Attempt to anticipate needs […] Ask yes or no questions when appropriate

• #16 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Encourage daily exercise […] Follow speech therapist diet recommendations […] Administer medications as ordered […] Modify environment to support safety and independence […] Provide nutritional support as needed […] Refer to community agencies for support […] Provide respiratory support such as suctioning, oxygenation as needed […] Assist with activities of daily living including feeding, bed positioning, transferring, toileting, dressing, and bathing as needed […] Have suction available at the bedside […] Provide communication aids. […] Expected Outcomes […] Utilizes techniques to reduce the amount and frequency of depressive episodes or insomnia […] Makes needs known utilizing verbal or nonverbal methods […] Maintains functional mobility as long as possible within disease limitations

• #17 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  The daily needs of a person living with Huntingtons disease changes overtime. During the first stage, they might need help adjusting to their new normal. This can include talking about their fears and concerns. As the disease progresses, they’ll need help with daily tasks like going to appointments, taking their medications and making meals. As a caregiver, you need to make sure that they’re able to get the help they need, says Nicka. […] People with Huntingtons disease are more at risk for falls and other accidents. As the caregiver, you should do an assessment of their living space and identify any potential hazards. […] During the early and middle stages, moderate support is needed. But as the disease progresses, their needs will become greater. If your loved one can’t live on their own or take care of themselves, then you’ll need to decide whether to support them with in-home care or whether full-time care at a healthcare facility is necessary. People can stay at home in the end stage, but they will need a lot more support from family because it’s quite a bit to be asked of one care provider, says Nicka.

• #18 Huntington’s treatment & management

  https://medically.roche.com/global/en/microsites/huntingtons-disease/diagnosis-and-symptom-management.html

  Since Huntingtons disease (HD) has such varied symptoms, it is important, when possible, for you to work closely with other healthcare professionals to create personalised care plans to address the diverse needs of individuals with HD.9,11 […] The goal of the multidisciplinary care team is to reduce the burden of symptoms, maximise function and optimise quality of life.1 […] Neurologists oversee the diagnosis, overall care coordination, neurological management and referrals to other team members during all stages of HD progression.1 […] Psychiatrists work with individuals over the course of their disease, providing overall care coordination, psychiatric management, and medications, while helping them navigate the mental healthcare system.1 […] Social workers help individuals with everything from financial and insurance planning to connecting them with support groups and HD programmes.

• #19 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Disturbed thought process related to disease process as evidence by depression, memory problems, confusion, emotional changes, and insomnia […] At risk for skin breakdown related to constant movement, chorea, and incontinence […] Self-care deficit related to depression, memory problems, chorea as evidence by requires assistance with activities of daily living. […] Interventions […] Keep skin clean and dry […] Assist with ambulation and transfers […] Assist the individual in sitting up during meals […] Monitor for choking and coughing during meals […] Actively listen to feelings and concerns […] Assess for potential suicide risk and suicidal ideation […] Speech, physical, and occupational therapy referrals […] Attempt to anticipate needs […] Ask yes or no questions when appropriate

• #20 Huntington’s Disease Assessment and Interventions for Nursing RN

  https://www.picmonic.com/pathways/nursing/courses/standard/medical-surgical-nursing-pathophysiology-296/central-nervous-system-disorders-1438/huntingtons-disease-assessment-and-interventions_1739

  Huntington’s disease causes choreic movements that increase the patient’s caloric requirements. In order to maintain body weight, the patient may need up to 5000 calories/day. As the disease progresses, maintaining nutritional requirements may necessitate a switch to pureed foods or thickened liquid diets since patients may have increased difficulty swallowing.

• #21 Huntington’s Disease care

  https://www.inspireneurocare.co.uk/neurocare-and-rehabilitation/huntingtons-disease-care/

  With a comprehensive understanding of the specialist services required to provide Huntington’s disease care, our nurses provide care in areas like supported nutrition, encompassing PEG nutrition, feeding tube nutrition, and a high calorie diet where required. […] Through their dedicated and holistic approach, Inspire’s specialist nurses ensure that every individual with HD receives the highest level of care, promoting well-being and the quality of day-to-day life. […] Navigating the cognitive and emotional aspects of Huntington’s disease care requires specialist knowledge and understanding. […] Inspire’s physiotherapists are dedicated to aiding individuals with Huntington’s disease, tackling the physical challenges that come with this condition. […] Inspire’s speech and language therapists offer specialised support for people with Huntington’s disease, addressing the unique communication challenges they face.

• #22 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Disturbed thought process related to disease process as evidence by depression, memory problems, confusion, emotional changes, and insomnia […] At risk for skin breakdown related to constant movement, chorea, and incontinence […] Self-care deficit related to depression, memory problems, chorea as evidence by requires assistance with activities of daily living. […] Interventions […] Keep skin clean and dry […] Assist with ambulation and transfers […] Assist the individual in sitting up during meals […] Monitor for choking and coughing during meals […] Actively listen to feelings and concerns […] Assess for potential suicide risk and suicidal ideation […] Speech, physical, and occupational therapy referrals […] Attempt to anticipate needs […] Ask yes or no questions when appropriate

• #23 FF #201 Palliative Care for Patients with Huntington’s Disease | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-huntingtons-disease/

  Impact on Families HD often begins during a time when family life is most complex and therefore most disruptive to the family structure (e.g. child-rearing, career development). Children can be particularly affected: distress is aggravated by concerns about their own genetic susceptibility, and as many as 40% of children of HD patients describe HD as splitting their family apart. Careful assessments of familial coping and psychosocial needs are an integral part of ongoing care for the HD patient. […] Common Symptoms and Supportive Care Patients are best served by an interdisciplinary team familiar with caring for patients with HD. Motor Manifestations. Abnormal involuntary movements include: chorea, dystonia, rigidity, bradykinesia, tremor, and myoclonus; other motor manifestations include gait and balance problems leading to frequent falls, slurred speech and swallowing difficulties. First-line strategies are non-pharmacologic and include gait/balance training, speech therapy, and orthotics and leg weights to assist with upright posture. Chorea is the most frequently targeted symptom for pharmacologic therapy. Tetrabenazine (a dopamine depleting agent) has been shown to reduce chorea in a well-designed placebo controlled trial; it is undergoing approval in the US. Haloperidol and other antipsychotics are also used for chorea, although trials evaluating their effectiveness have shown mixed results. Psychiatric manifestations are present in over half of HD patients. Depression is a significant psychiatric problem and rates of suicide are higher in HD patients than the general population. Case reports support using tricyclic as well as newer antidepressants. Agitation is also common, and a small number of patients develop psychosis. Atypical neuroleptics are commonly used. Emotional lability (including episodes of extreme anger) can respond to propranolol. Low doses of scheduled benzodiazepines before meals or propranolol are used to control motor manifestations and anxiety related to eating. Establishing strict daily and hourly routines can help lessen anxiety, short-term memory deficits, intrusive thoughts, and fear of abandonment. Cognitive Deficits: gradual loss of memory and executive function are common. Consequently, increasing impairments in initiating movements and conversation occur. Yes/no questions may be preferable over open-ended questions when cognitive impairments become severe.

• #24 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Disturbed thought process related to disease process as evidence by depression, memory problems, confusion, emotional changes, and insomnia […] At risk for skin breakdown related to constant movement, chorea, and incontinence […] Self-care deficit related to depression, memory problems, chorea as evidence by requires assistance with activities of daily living. […] Interventions […] Keep skin clean and dry […] Assist with ambulation and transfers […] Assist the individual in sitting up during meals […] Monitor for choking and coughing during meals […] Actively listen to feelings and concerns […] Assess for potential suicide risk and suicidal ideation […] Speech, physical, and occupational therapy referrals […] Attempt to anticipate needs […] Ask yes or no questions when appropriate

• #25 Nursing Approaches and Perceived Quality of Life in Advanced Stage Huntington’s Disease Patients – PubMed

  https://pubmed.ncbi.nlm.nih.gov/35570495/

  Long-term Huntington’s disease (HD) care is offered in specialized inpatient nursing home units with a focus on individually perceived quality of life (QoL). […] Preservation of identity and autonomy is important for patients. Patients struggle with increasing dependence, and try to cope with the impact, uncertainty, and progressive nature of the disease. […] Both patients and family members mention the difficulty of dealing with altered behavior and loss of control. Patients are reliant on a relational approach, and an attitude of unconditional acceptance, trust, and understanding support by the nurses. […] Particular nursing approaches and attitude and qualifications of the nursing staff in residential HD care improves the perceived QoL of patients.

• #26 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  Nicka also stresses the importance of using inclusionary statements when speaking to your loved one with Huntingtons disease. Use we, for example. We need to wash your hands. We need to make dinner, says Nicka. It just makes it feel less directive and not like you’re nagging. […] Having a team of medical professionals around you and your loved one can prove to be beneficial in a lot of different ways. In addition to a neurologist, you might want to consider enlisting a physical therapist or occupational therapist. A speech therapist can also be helpful. For more support and guidance, caretakers can use organizations like the Huntingtons Disease Society of America as a resource. As the caregiver, you may also need to consider becoming a power of attorney or possible guardian, so you have access to your loved one’s medical records and care plans. You may also want to talk about advanced directives with your loved one. A social worker can help your family navigate complex medical issues and legal documents.

• #27 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Encourage daily exercise […] Follow speech therapist diet recommendations […] Administer medications as ordered […] Modify environment to support safety and independence […] Provide nutritional support as needed […] Refer to community agencies for support […] Provide respiratory support such as suctioning, oxygenation as needed […] Assist with activities of daily living including feeding, bed positioning, transferring, toileting, dressing, and bathing as needed […] Have suction available at the bedside […] Provide communication aids. […] Expected Outcomes […] Utilizes techniques to reduce the amount and frequency of depressive episodes or insomnia […] Makes needs known utilizing verbal or nonverbal methods […] Maintains functional mobility as long as possible within disease limitations

• #28 Huntington’s Disease: Symptoms & Causes | NewYork-Presbyterian

  https://www.nyp.org/neuro/parkinsons-disease-movement-disorders/huntingtons-disease

  NewYork-Presbyterian is a world leader in Huntingtons disease research and care. Doctors at the Huntingtons Disease Center of Excellence of Columbia University offer genetic counseling and testing services for individuals with a family history of Huntingtons, as well as comprehensive care and support for those with the disease and their families. […] Involuntary movements in multiple areas of the body (chorea) may become more severe. […] At this stage, patients may be aware of the daily activities that need to be done but not be able to do them alone. They may be unable to live independently and may require help from family members or other caregivers. […] NewYork-Presbyterians pediatric neurology teams care for children and adolescents with Huntingtons disease. […] The choice to undergo genetic testing is a highly personal one. Our Huntingtons disease testing team includes a genetic counselor, neurologists, psychiatrists, and other mental health specialists, a social worker, and a medical geneticist who can help you with this decision and, if you choose to test, explain the implications of your results. […] When you come to NewYork-Presbyterian for Huntingtons disease care, you benefit from the experience and expertise of pioneers in the field.

• #29 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Disturbed thought process related to disease process as evidence by depression, memory problems, confusion, emotional changes, and insomnia […] At risk for skin breakdown related to constant movement, chorea, and incontinence […] Self-care deficit related to depression, memory problems, chorea as evidence by requires assistance with activities of daily living. […] Interventions […] Keep skin clean and dry […] Assist with ambulation and transfers […] Assist the individual in sitting up during meals […] Monitor for choking and coughing during meals […] Actively listen to feelings and concerns […] Assess for potential suicide risk and suicidal ideation […] Speech, physical, and occupational therapy referrals […] Attempt to anticipate needs […] Ask yes or no questions when appropriate

• #30 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Encourage daily exercise […] Follow speech therapist diet recommendations […] Administer medications as ordered […] Modify environment to support safety and independence […] Provide nutritional support as needed […] Refer to community agencies for support […] Provide respiratory support such as suctioning, oxygenation as needed […] Assist with activities of daily living including feeding, bed positioning, transferring, toileting, dressing, and bathing as needed […] Have suction available at the bedside […] Provide communication aids. […] Expected Outcomes […] Utilizes techniques to reduce the amount and frequency of depressive episodes or insomnia […] Makes needs known utilizing verbal or nonverbal methods […] Maintains functional mobility as long as possible within disease limitations

• #31 What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease: a position paper | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02622-8

  A holistic approach requires the HCP to look beyond their own expertise. […] Therefore, we would propose that patient-centred care needs to be defined as a family-centred approach. […] Long-term trust building includes getting to know the patient and family and learning about their needs and unsolved issues. […] Acknowledging and emphasising the patient and family members’ experience with the disease, i.e. what is causing challenges and problems for the individual and the family is pivotal. […] The fact that HD is a complex neurodegenerative disease with cognitive decline and psychiatric problems complicated by stigma, shame, and fear of what will come creates a paradoxical situation for the health care system. […] Nurses are acknowledged as an important part of delivering care for people with HD and their families.

• #32 FF #201 Palliative Care for Patients with Huntington’s Disease | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-huntingtons-disease/

  FF #201 Palliative Care for Patients with Huntington’s Disease […] Background Huntington’s disease (HD) is an incurable neurodegenerative disorder inherited in an autosomal dominant fashion. It is characterized by progressive movement disorders, psychiatric manifestations, behavioral abnormalities, and cognitive impairment. This Fast Fact will focus on supportive and terminal care for patients with HD and their families. […] Natural History and Prognosis Symptom onset is usually between 33 and 44 years; subtle cognitive and motor changes may precede diagnosis by many years. Mean duration of illness from onset to death is 15-20 years with average age of death of 60 years; there are no proven therapies which slow the progression of HD. Patients show signs of progressive dementia and become unable to walk, talk, take in nutrition, and care for themselves. Life threatening complications may result from aspiration, chronic infections, poor nutrition, falls, or cardiovascular disease. ~1/3 of all patients with HD are institutionalized in long-term care facilities.

• #33 Huntington’s Disease Assessment and Interventions for Nursing RN

  https://www.picmonic.com/pathways/nursing/courses/standard/medical-surgical-nursing-pathophysiology-296/central-nervous-system-disorders-1438/huntingtons-disease-assessment-and-interventions_1739

  Huntington’s disease is a degenerative neurologic disorder that affects both men and women. This autosomal dominant disease has a late onset between 30 to 50 years of age. The deficiency of acetylcholine and GABA, an inhibitory neurotransmitter, causes choreiform movements and cognitive decline. As the disease progresses, gait deteriorates and decrease muscle control increases the risk of aspiration. Interventions for Huntington’s disease include genetic counseling in addition to the administration of neuroleptics and tetrabenazine. Nursing considerations include educating the patient about the stages of Huntington’s disease and recommending a high calorie diet to prevent malnutrition. […] Huntington’s disease is a progressive condition that is classified in stages. Each of the three stages lasts about 5 years. During stage 1, the patient may present with psychological and neurological deficits but is able to maintain independence. During stage 2, the patient may experience increased choreiform movements and will require assistance with ADLs. The majority of patients in stage 3 of Huntington’s disease are completely dependent on others to perform ADLs.

• #34 Huntington’s Disease Assessment and Interventions for Nursing RN

  https://www.picmonic.com/pathways/nursing/courses/standard/medical-surgical-nursing-pathophysiology-296/central-nervous-system-disorders-1438/huntingtons-disease-assessment-and-interventions_1739

  Huntington’s disease is a degenerative neurologic disorder that affects both men and women. This autosomal dominant disease has a late onset between 30 to 50 years of age. The deficiency of acetylcholine and GABA, an inhibitory neurotransmitter, causes choreiform movements and cognitive decline. As the disease progresses, gait deteriorates and decrease muscle control increases the risk of aspiration. Interventions for Huntington’s disease include genetic counseling in addition to the administration of neuroleptics and tetrabenazine. Nursing considerations include educating the patient about the stages of Huntington’s disease and recommending a high calorie diet to prevent malnutrition. […] Huntington’s disease is a progressive condition that is classified in stages. Each of the three stages lasts about 5 years. During stage 1, the patient may present with psychological and neurological deficits but is able to maintain independence. During stage 2, the patient may experience increased choreiform movements and will require assistance with ADLs. The majority of patients in stage 3 of Huntington’s disease are completely dependent on others to perform ADLs.

• #35 Huntington’s Disease Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/huntingtons-disease-caregivers-youre-not-alone-article/

  In the early stage of Huntingtons disease, people are generally independent and can care for themselves. Early symptoms may include: […] Participating in a support group for people with early-stage HD can help the person you care for ease their distress and learn pro-active coping skills. Individual counseling can also be very helpful. […] Make educating yourself about Huntingtons Disease a priority during the early stages of the disease. […] Healthy ways to grieve may include: […] Huntingtons is a disease that affects everyone in the family in different ways. This includes you as the caregiver, the person with HD, their relatives, and friends. Each will require their own kind of support. […] Both you and the person you care for will have to learn to balance HD symptoms and care needs with the desire to be independent.

• #36 Huntington’s Disease Assessment and Interventions for Nursing RN

  https://www.picmonic.com/pathways/nursing/courses/standard/medical-surgical-nursing-pathophysiology-296/central-nervous-system-disorders-1438/huntingtons-disease-assessment-and-interventions_1739

  Huntington’s disease is a degenerative neurologic disorder that affects both men and women. This autosomal dominant disease has a late onset between 30 to 50 years of age. The deficiency of acetylcholine and GABA, an inhibitory neurotransmitter, causes choreiform movements and cognitive decline. As the disease progresses, gait deteriorates and decrease muscle control increases the risk of aspiration. Interventions for Huntington’s disease include genetic counseling in addition to the administration of neuroleptics and tetrabenazine. Nursing considerations include educating the patient about the stages of Huntington’s disease and recommending a high calorie diet to prevent malnutrition. […] Huntington’s disease is a progressive condition that is classified in stages. Each of the three stages lasts about 5 years. During stage 1, the patient may present with psychological and neurological deficits but is able to maintain independence. During stage 2, the patient may experience increased choreiform movements and will require assistance with ADLs. The majority of patients in stage 3 of Huntington’s disease are completely dependent on others to perform ADLs.

• #37 Huntington’s Disease Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/huntingtons-disease-caregivers-youre-not-alone-article/

  A common question caregivers ask, is what will happen to the person I care for if something happens to me? […] During the middle stage of Huntingtons Disease, a person will need more help with basic personal care, such as bathing, dressing, and brushing their teeth. […] As the disease advances, it is common for caregivers to feel isolated and overwhelmed. […] These are all signs that you need more support and time to take care of yourself. […] Because HD causes motor changes, its important to identify potential hazards that may exist in the home. […] Get referrals for these types of professionals: […] A person in late-stage HD will need help with all of their personal care. […] Moving the person to a nursing facility can be a tough decision, but a necessary one. […] We highly encourage you to connect with a caregiver support group or local HD program to hear from others with similar experiences. […] Hospice services are designed to support individuals towards the end of life. […] The goal of hospice is making the patient as comfortable as possible. […] Your ongoing presence and advocacy will help ensure that proper care is provided.

• #38 Huntington’s Disease Assessment and Interventions for Nursing RN

  https://www.picmonic.com/pathways/nursing/courses/standard/medical-surgical-nursing-pathophysiology-296/central-nervous-system-disorders-1438/huntingtons-disease-assessment-and-interventions_1739

  Huntington’s disease is a degenerative neurologic disorder that affects both men and women. This autosomal dominant disease has a late onset between 30 to 50 years of age. The deficiency of acetylcholine and GABA, an inhibitory neurotransmitter, causes choreiform movements and cognitive decline. As the disease progresses, gait deteriorates and decrease muscle control increases the risk of aspiration. Interventions for Huntington’s disease include genetic counseling in addition to the administration of neuroleptics and tetrabenazine. Nursing considerations include educating the patient about the stages of Huntington’s disease and recommending a high calorie diet to prevent malnutrition. […] Huntington’s disease is a progressive condition that is classified in stages. Each of the three stages lasts about 5 years. During stage 1, the patient may present with psychological and neurological deficits but is able to maintain independence. During stage 2, the patient may experience increased choreiform movements and will require assistance with ADLs. The majority of patients in stage 3 of Huntington’s disease are completely dependent on others to perform ADLs.

• #39 Huntington’s Disease Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/huntingtons-disease-caregivers-youre-not-alone-article/

  A common question caregivers ask, is what will happen to the person I care for if something happens to me? […] During the middle stage of Huntingtons Disease, a person will need more help with basic personal care, such as bathing, dressing, and brushing their teeth. […] As the disease advances, it is common for caregivers to feel isolated and overwhelmed. […] These are all signs that you need more support and time to take care of yourself. […] Because HD causes motor changes, its important to identify potential hazards that may exist in the home. […] Get referrals for these types of professionals: […] A person in late-stage HD will need help with all of their personal care. […] Moving the person to a nursing facility can be a tough decision, but a necessary one. […] We highly encourage you to connect with a caregiver support group or local HD program to hear from others with similar experiences. […] Hospice services are designed to support individuals towards the end of life. […] The goal of hospice is making the patient as comfortable as possible. […] Your ongoing presence and advocacy will help ensure that proper care is provided.

• #40 Huntington’s disease – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117

  Huntington’s disease care at Mayo Clinic […] Eventually, a person with Huntington’s disease requires help with all activities of daily living and care. […] Common causes of death include: […] Huntington’s disease is caused by a difference in a single gene that’s passed down from a parent. Huntington’s disease follows an autosomal dominant inheritance pattern. This means that a person needs only one copy of the nontypical gene to develop the disorder.

• #41 FF #201 Palliative Care for Patients with Huntington’s Disease | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-huntingtons-disease/

  Advance Care Planning Advanced care planning should be performed as early as possible, prior to cognitive impairment. Of particular importance is establishing a health care power of attorney, as well as documenting guidance to families for likely decisions they will face (such as tube feeding and mechanical ventilation). Some states require clear evidence that a patient would want tube feeding withheld or withdrawn at the end of life and patients should be instructed to document this if consistent with their wishes. […] Terminal Care There are no evidence-based criteria for determining a 6 month prognosis in HD; web-based reference 13, however, provides some guidance regarding hospice eligibility. A retrospective, multi-centered study of over 100 HD patients, suggested that the hospice length of stay is longer than non-HD hospice patients and only a significant minority of HD patients are able to die at home. Labored breathing, excessive secretions, and restlessness are common terminal symptoms.

• #42 Hospice Care for Late-Stage Huntington’s Disease | Hospice

  https://www.compassus.com/for-caregivers/how-a-doctor-chose-his-own-path-to-hospice-care/hospice-for-advanced-huntington-s-disease/

  If youre caring for someone with late-stage Huntingtons disease, you probably dont need us to explain the challenges that come with the disease. We recognize that you need clear information about hospice care for late-stage Huntingtons disease and practical support. […] Some families tell us theyre reluctant to ask for a hospice evaluation because it feels like giving up. Hospice is not about dying. Its about reducing pain, anxiety, and other symptoms so patients and families can focus on the best quality of life possible. Hospice also addresses the emotional and spiritual needs of patients, as well as family, who often need as much support as patients themselves. […] Families dealing with Huntingtons should ask for a hospice or palliative care referral as early as possible. […] An example is planning for swallowing problems common in the late stages of Huntingtons disease. Swallowing often becomes so difficult that patients cant eat enough to maintain their weight. Understanding the benefits and drawbacks of artificial feeding, and sharing your thoughts with medical providers, enables you to get the medical treatments you want.

• #43 Huntington’s disease – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/diagnosis-treatment/drc-20356122

  It’s important to plan for care that will be needed in the advanced stages of the disease and near the end of life. Early discussions about care allow the person with Huntington’s disease to be engaged and to share what they want from their care. […] In-home nursing care or care in an assisted living facility or nursing home is needed during the advanced stages of the disease. […] Hospice services provide care at the end of life that helps a person approach death with as little discomfort as possible. This care also provides support and education to family members to help them understand the process of dying.

• #44 Hospice Care for Late-Stage Huntington’s Disease | Hospice

  https://www.compassus.com/for-caregivers/how-a-doctor-chose-his-own-path-to-hospice-care/hospice-for-advanced-huntington-s-disease/

  Hospice referrals for Huntingtons can be challenging because its difficult to predict decline. Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia, and uncontrolled pain. […] Your hospice team includes a doctor, nurses, social worker, counselor, chaplain, home health aide, and trained volunteers. They work with you and your doctors on personalized hospice care for late-stage Huntingtons disease. […] Hospice providers have specialized training to manage pain, especially for those who have difficulty communicating. […] Other services from the hospice team may include: Medicines and strategies to manage breathing and swallowing problems, Controlling nausea, Managing anxiety and difficult emotions, Reducing incontinence or constipation issues, Preventing pressure ulcers and other skin-related problems, Inpatient respite care when family caregivers need relief, Coordinating with nursing facilities if a loved one needs continuous care, Emotional and spiritual support for patients and family, Grief support for up to 13 months after the death of a loved one.

• #45 Hospice Care for Late-Stage Huntington’s Disease | Hospice

  https://www.compassus.com/for-caregivers/how-a-doctor-chose-his-own-path-to-hospice-care/hospice-for-advanced-huntington-s-disease/

  Hospice referrals for Huntingtons can be challenging because its difficult to predict decline. Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia, and uncontrolled pain. […] Your hospice team includes a doctor, nurses, social worker, counselor, chaplain, home health aide, and trained volunteers. They work with you and your doctors on personalized hospice care for late-stage Huntingtons disease. […] Hospice providers have specialized training to manage pain, especially for those who have difficulty communicating. […] Other services from the hospice team may include: Medicines and strategies to manage breathing and swallowing problems, Controlling nausea, Managing anxiety and difficult emotions, Reducing incontinence or constipation issues, Preventing pressure ulcers and other skin-related problems, Inpatient respite care when family caregivers need relief, Coordinating with nursing facilities if a loved one needs continuous care, Emotional and spiritual support for patients and family, Grief support for up to 13 months after the death of a loved one.

• #46 Palliative Care and Huntington’s Disease | Get Palliative Care

  https://getpalliativecare.org/whatis/disease-types/huntingtons-disease-and-palliative-care/

  Palliative care is specialized medical care for people with a serious illness such as Huntingtons Disease. The goal of palliative care is to improve quality of life for both the patient and their family. […] Palliative care can make a big difference. The palliative care team can manage symptoms and side effects of treatment. They can provide medications to relieve muscle spasms, calm nervousness and manage shortness of breath. […] Palliative care specialists are experts in treating the symptoms of Huntingtons Disease and the side effects of treatments. They can help you adjust, understand complex medical information, and help you match your treatment choices to your needs and goals. […] Ask your doctor for a referral to palliative care if you or a loved one is living with Huntingtons Disease.

• #47 Nursing Care for Huntington’s Disease – Straight A Nursing

  https://straightanursingstudent.com/huntingtons-disease/

  Provide supportive care to the patient and family. Ensure the patient and family understand the increased risk for suicide and the burdens that the disease places on caregivers. Teach caregivers to seek respite care whenever possible and help them understand resources that are available to assist with finances and care (the family will likely have a social worker or case manager who will take the lead on this).

• #48 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  Your loved one may need to talk to a psychiatrist or psychologist about the emotional changes they’re feeling. They may experience impulse control issues, mood swings, irritability and depression. Talking to a professional can help navigate the changes they’re experiencing, says Nicka. […] With the time and care you put into looking after your loved one, you also need to make sure to take care of yourself. It doesn’t matter if it’s a licensed and trained therapist, a pastor or a good friend, just make sure that you have some form of an outlet or even the space to vent and express yourself, says Nicka. That’s helpful to maintain that level of care that someone with Huntingtons disease needs. […] Taking care of your own well-being is just as important as brushing your teeth and washing your hands, says Nicka. Caregivers tend to have this mentality of taking care of the other person first and foremost, and anything that the caregiver needs is going come second, says Nicka. But just like in an airplane, you got to make sure that you put your mask on first before you help someone.

• #49 Huntington’s Chorea Nursing Management – RNpedia

  https://www.rnpedia.com/nursing-notes/medical-surgical-nursing-notes/huntingtons-chorea-nursing-management/

  Huntingtons disease (also called Huntingtons chorea) is a rare abnormal hereditary disorder of the CNS. It is characterized by chronic progressive chorea (involuntary purposeless, rapid movements) and mental deterioration that results in dementia. […] Although no treatments halts or reverse the underlying processes, several medications prescribed. […] Disease management includes rehabilitative therapy, teaching, counseling and professional legal, financial and estate planning advice. […] The nurse needs to educate and support the patient and family as they adjust to the lifestyle changes that are required. […] Regular moderate exercise can reduce stiffness and tremors. […] As the disease progresses, the patient and family will require more assistance with activities of daily living, emotional support, and potential financial concerns.

• #50 Taking Care of a Loved One With Huntington’s Disease

  https://www.verywellhealth.com/caring-for-a-loved-one-with-huntingtons-disease-5095920

  If your loved one is still relatively independent, you can help by working together on a checklist of daily self-care tasks like brushing teeth, eating, getting enough fluid, using the toilet, and avoiding staying in one position for too long. […] Huntingtons disease can advance to a degree that is too hard to manage at home. […] You can help optimize your loved ones ability to cope with these issues by helping them stay oriented with a predictable schedule, calendars, clocks, and familiar surroundings. […] Try to help them maintain some of the hobbies they enjoy, if that’s possible. […] Taking care of yourself is vital when you are caring for someone who has Huntingtons disease. […] All of these issues can be hard to deal with on your own, and it’s important that you seek help from others, including professional help and guidance as you navigate the process. […] Your own mood and health are important, and maintaining your best life can help lift your loved ones spirits as well.

• #51 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  Your loved one may need to talk to a psychiatrist or psychologist about the emotional changes they’re feeling. They may experience impulse control issues, mood swings, irritability and depression. Talking to a professional can help navigate the changes they’re experiencing, says Nicka. […] With the time and care you put into looking after your loved one, you also need to make sure to take care of yourself. It doesn’t matter if it’s a licensed and trained therapist, a pastor or a good friend, just make sure that you have some form of an outlet or even the space to vent and express yourself, says Nicka. That’s helpful to maintain that level of care that someone with Huntingtons disease needs. […] Taking care of your own well-being is just as important as brushing your teeth and washing your hands, says Nicka. Caregivers tend to have this mentality of taking care of the other person first and foremost, and anything that the caregiver needs is going come second, says Nicka. But just like in an airplane, you got to make sure that you put your mask on first before you help someone.

• #52 Hospice Care for Late-Stage Huntington’s Disease | Hospice

  https://www.compassus.com/for-caregivers/how-a-doctor-chose-his-own-path-to-hospice-care/hospice-for-advanced-huntington-s-disease/

  Family caregivers who find meaning and purpose in their journey are healthier, happier, and experience less burnout. Learn to step back and find your source of joy. The best caregivers are those who learn to care for themselves. […] An evaluation is the first step for hospice or palliative care. Doctors typically recommend care, but you, your family, or caregivers may request an evaluation. […] Get the help you need. Call us at 833.380.9583 or contact a local Compassus office to learn about referrals and care for palliative care and hospice care for advanced Huntingtons disease.

• #53 Caring for Someone With Huntington’s Disease

  https://health.clevelandclinic.org/to-care-for-someone-with-huntingtons-disease

  Nicka also stresses the importance of using inclusionary statements when speaking to your loved one with Huntingtons disease. Use we, for example. We need to wash your hands. We need to make dinner, says Nicka. It just makes it feel less directive and not like you’re nagging. […] Having a team of medical professionals around you and your loved one can prove to be beneficial in a lot of different ways. In addition to a neurologist, you might want to consider enlisting a physical therapist or occupational therapist. A speech therapist can also be helpful. For more support and guidance, caretakers can use organizations like the Huntingtons Disease Society of America as a resource. As the caregiver, you may also need to consider becoming a power of attorney or possible guardian, so you have access to your loved one’s medical records and care plans. You may also want to talk about advanced directives with your loved one. A social worker can help your family navigate complex medical issues and legal documents.

• #54 Huntington’s Disease care

  https://www.inspireneurocare.co.uk/neurocare-and-rehabilitation/huntingtons-disease-care/

  Inspire’s occupational therapist provides support for people with Huntington’s disease to make everyday tasks easier or more achievable, from dressing and eating to strategies to enhance memory and problem-solving. […] At Inspire, we understand the challenges carers face when caring for those with Huntington’s disease. Respite care for people with Huntington’s disease provides temporary rest and relief for primary caregivers typically a family member looking after people with Huntington’s. […] Our compassionate and skilled team ensures that individuals with HD receive comprehensive and tailored care during their stay, allowing families and carers a vital break to rest, in the knowledge that their loved one is in expert hands.

• #55 Long term care options for patients with Huntington’s disease

  https://www.hdreach.org/living-well/finding-long-term-care/long-term-care.html

  The symptoms of Huntingtons disease worsen over time. In the last stages of HD, a person will need 24-hour care provided by family members or, in most cases, at a long-term care (LTC) facility. […] Eventually, almost all patients with HD will move into a full care facility to provide for all of their needs. […] Ideally, you will find a place that is knowledgeable and experienced with caring for people with Huntingtons disease. […] Bringing a skilled nurse into the home can help when the symptoms of HD progress to a certain point. […] Nursing Homes A residence providing skilled nursing and therapy staff. Their trained staff may provide medical care, occupational therapy, speech therapy, and physical therapy.

• #56 Huntington’s disease – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/diagnosis-treatment/drc-20356122

  It’s important to plan for care that will be needed in the advanced stages of the disease and near the end of life. Early discussions about care allow the person with Huntington’s disease to be engaged and to share what they want from their care. […] In-home nursing care or care in an assisted living facility or nursing home is needed during the advanced stages of the disease. […] Hospice services provide care at the end of life that helps a person approach death with as little discomfort as possible. This care also provides support and education to family members to help them understand the process of dying.

• #57 Huntington’s Disease Care | Good Samaritan

  https://www.good-sam.com/services/long-term-care/huntingtons-disease-care

  The care of individuals with Huntington’s disease requires skilled nursing expertise in a variety of disciplines, including behavioral, cognitive, dietary, and a range of physical disabilities. […] With care, patience and creativity, we are able to care for residents with Huntington’s disease in a manner that maximizes their independence, preserves dignity and focuses on enhancing quality of life. […] It is our experienced nursing staff in conjunction with our creative arts personnel (art therapy, music therapy and therapeutic recreation) that puts the stamp of personality, energy, livelihood and involvement on our Huntington’s care community. […] The Good Samaritan Society- Specialty Care Community in Robbinsdale, Minnesota is a nationally recognized Huntington’s disease care community that understands the personalized care your loved one requires.

• #58 Health Care Delivery Practices in Huntington’s Disease Specialty Clinics: An International Survey

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942722/

  Little is known about the organization of clinical services for Huntingtons disease (HD). […] To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. […] Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. […] The majority of centers (59.7%) follow 50199 patients, 21.9% care for more than 200. […] There is general agreement that comprehensive and multidisciplinary care is needed for individuals and families affected by HD. […] Coordination of services, including medical and clinical services and social and community resources, is central in multidisciplinary approach. […] Multidisciplinary care is considered the gold standard in care delivery in complex chronic disease, including Huntingtons disease.

• #59 Huntington’s Disease Care Center | Medical, Emotional & Psychosocial for HD | ArchCareBack to Top

  https://www.archcare.org/huntingtons-disease/

  When your loved one joins us at Terence Cardinal Cooke or Ferncliff, they will be supported by a dedicated interdisciplinary Care Team lead by a physician who specializes in HD. […] State-of-the-art technology, specially-adapted architecture, and onsite psychiatric and behavior management services ensure your loved one is safe and comfortable. […] When your loved one has early, mid, or late-stage Huntington’s disease, they need care for their body, mind, and spirit. At ArchCare, we call this the circle of care. […] As the largest Huntington’s disease care provider in New York, we know what it takes to create a better quality of life. […] Huntington’s disease affects movement, emotions, thinking, speaking, and even how you experience the world. You need a team that sees ahead, plans ahead, and cares ahead.

• #60 Huntington’s Disease Program | Fresh River Healthcare

  https://www.freshriverhealthcare.com/services/huntingtons-disease-program/

  Personalized Nursing Care Plans are provided. […] Long-term care plans are tailored to each individual resident, his/her condition, and disease progression. […] We recognize the unique psychosocial needs of individuals with Huntingtons Disease, as well as the needs of their families and caregivers. […] Fresh Rivers Registered Dietitian ensure that each residents nutritional needs are consistently met through individualized care plans. […] The NeuroGym physical activation program is overseen by the highly trained Rehabilitation Team. […] The NeuroGym equipment and physical activation program will be available to those same residents and outpatients and will work as part of a holistic therapy and treatment program. […] You can always turn to us for more information and assistance with placement for a loved one with Huntingtons Disease.

• #61 Health Care Delivery Practices in Huntington’s Disease Specialty Clinics: An International Survey

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942722/

  The introduction of a HD nurse specialist resulted in decreased hospital admissions by 51%, and hospitalization was more appropriate in those who were admitted, suggesting that care management services may be a critical component of service delivery in HD. […] Most centers (70.4%) report following published guidelines or local care pathways for HD. […] The survey gives insight into factors underpinning HD service delivery globally. […] There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care.

• #62 What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease: a position paper | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02622-8

  A holistic approach requires the HCP to look beyond their own expertise. […] Therefore, we would propose that patient-centred care needs to be defined as a family-centred approach. […] Long-term trust building includes getting to know the patient and family and learning about their needs and unsolved issues. […] Acknowledging and emphasising the patient and family members’ experience with the disease, i.e. what is causing challenges and problems for the individual and the family is pivotal. […] The fact that HD is a complex neurodegenerative disease with cognitive decline and psychiatric problems complicated by stigma, shame, and fear of what will come creates a paradoxical situation for the health care system. […] Nurses are acknowledged as an important part of delivering care for people with HD and their families.

• #63 What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease: a position paper | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02622-8

  A holistic approach requires the HCP to look beyond their own expertise. […] Therefore, we would propose that patient-centred care needs to be defined as a family-centred approach. […] Long-term trust building includes getting to know the patient and family and learning about their needs and unsolved issues. […] Acknowledging and emphasising the patient and family members’ experience with the disease, i.e. what is causing challenges and problems for the individual and the family is pivotal. […] The fact that HD is a complex neurodegenerative disease with cognitive decline and psychiatric problems complicated by stigma, shame, and fear of what will come creates a paradoxical situation for the health care system. […] Nurses are acknowledged as an important part of delivering care for people with HD and their families.

• #64 Huntington’s treatment & management

  https://medically.roche.com/global/en/microsites/huntingtons-disease/diagnosis-and-symptom-management.html

  Genetic counsellors work in the early stages of HD, assisting individuals with genetic testing and family counselling. 1 […] Nurse specialists manage cases as well as provide telephone counselling and support for individuals with HD and their families. 1 […] Dietitians work on healthy eating for HD. They make recommendations on calorie counts, food and liquid alterations, and assist with proper feeding tube supplements (if appropriate). 1 […] Physical therapists develop exercise programmes and help with home preparedness and safety for the early stages of HD. […] Occupational therapists, if appropriate, do an assessment of the individuals workplace and their driving abilities in the early stages of HD. […] Neuropsychologists oversee the management of symptoms related to personality and cognitive changes in individuals with HD. […] Psychologists offer family support and counselling on matters relating to their relationships, grief and symptom management. […] Speech and language therapists will conduct a pre-emptive evaluation of swallow function and provide counselling about safe swallowing in the early stages of HD.

• #65 Huntington’s Disease Association – Care pathway

  https://www.hda.org.uk/professionals-and-training/working-with-patients-and-families/care-pathway/

  The focus of this role will be to provide holistic support and advice to Huntington’s disease patients, their carers and family members living across Surrey. The post holder will work closely with individuals living with Huntington’s and their families to co-ordinate clinical care and improve overall quality of life. […] To coordinate the provision of community services for people with Huntington’s, working in partnership with patients and carers, health and social care colleagues, and voluntary and private sector agencies. […] To provide specialist input to patients with Huntington’s disease and their carers, to enable them to manage their condition and live as independently as possible. […] To develop appropriate, individualised management plans. […] To develop and maintain robust links between neurological clinics in secondary care and the community service. […] To work to reduce the rate of admissions and length of hospital stays for patients with Huntington’s disease, by working as part of the wider multi-disciplinary team (MDT).

• #66

  https://journals.lww.com/nursingmadeincrediblyeasy/fulltext/2017/07000/highlighting_huntington_disease.6.aspx

  Nurses caring for patients with Huntington disease need a broad base of knowledge. […] When working with adult patients in the healthcare setting, ask family members and/or caregivers about the patient’s routine. […] Due to the fact that safety can be a concern, modify the environment to keep the patient safe. […] Research has been conducted regarding the benefits of Huntington disease nurse specialists. […] Understanding this disorder will lead to improved patient safety and care quality.

• #67 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Encourage daily exercise […] Follow speech therapist diet recommendations […] Administer medications as ordered […] Modify environment to support safety and independence […] Provide nutritional support as needed […] Refer to community agencies for support […] Provide respiratory support such as suctioning, oxygenation as needed […] Assist with activities of daily living including feeding, bed positioning, transferring, toileting, dressing, and bathing as needed […] Have suction available at the bedside […] Provide communication aids. […] Expected Outcomes […] Utilizes techniques to reduce the amount and frequency of depressive episodes or insomnia […] Makes needs known utilizing verbal or nonverbal methods […] Maintains functional mobility as long as possible within disease limitations

• #68 Huntington’s Disease: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/huntingtons-disease/?srsltid=AfmBOooi4-SL-uv369IbiJt-_Nz_oNtAcOiQjDqoYzvcdmJ1wIL4vGHA

  Experiences no complications related to immobility […] Shows no signs or symptoms of aspiration […] Maintains adequate amounts of nutrients […] Remains free from falls with injuries […] Demonstrates effective coping strategies for anxiety and disturbed thought process […] Remains free from open areas on the skin […] Remains clean and well-groomed.

• #69 Health Care Delivery Practices in Huntington’s Disease Specialty Clinics: An International Survey

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942722/

  Little is known about the organization of clinical services for Huntingtons disease (HD). […] To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. […] Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. […] The majority of centers (59.7%) follow 50199 patients, 21.9% care for more than 200. […] There is general agreement that comprehensive and multidisciplinary care is needed for individuals and families affected by HD. […] Coordination of services, including medical and clinical services and social and community resources, is central in multidisciplinary approach. […] Multidisciplinary care is considered the gold standard in care delivery in complex chronic disease, including Huntingtons disease.

• #70 What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease: a position paper | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02622-8

  Huntingtons disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a persons functioning. […] The long progressive complex nature of the disease demands multiple disciplines for treatment and care of patient and family. […] These health care providers need inter- and multidisciplinary collaboration to persevere and be efficacious in this devastating disease trajectory. […] The complex nature of Huntington’s disease demands multidisciplinary treatment and care endorsed by international regulations and the lay association. […] Time needs to be invested in developing missing guidelines but the lack of this proof should not prevent the doing of good care. […] We believe that optimal care for this complex genetic disease cannot be provided by a single health care provider (HCP) but requires a comprehensive and multidisciplinary approach, adjusted to the patients’ and proxies individual needs and depending on the stage of the disease.

• #71 Huntington’s treatment & management

  https://medically.roche.com/global/en/microsites/huntingtons-disease/diagnosis-and-symptom-management.html

  Since Huntingtons disease (HD) has such varied symptoms, it is important, when possible, for you to work closely with other healthcare professionals to create personalised care plans to address the diverse needs of individuals with HD.9,11 […] The goal of the multidisciplinary care team is to reduce the burden of symptoms, maximise function and optimise quality of life.1 […] Neurologists oversee the diagnosis, overall care coordination, neurological management and referrals to other team members during all stages of HD progression.1 […] Psychiatrists work with individuals over the course of their disease, providing overall care coordination, psychiatric management, and medications, while helping them navigate the mental healthcare system.1 […] Social workers help individuals with everything from financial and insurance planning to connecting them with support groups and HD programmes.

• #72 Huntington’s treatment & management

  https://medically.roche.com/global/en/microsites/huntingtons-disease/diagnosis-and-symptom-management.html

  Genetic counsellors work in the early stages of HD, assisting individuals with genetic testing and family counselling. 1 […] Nurse specialists manage cases as well as provide telephone counselling and support for individuals with HD and their families. 1 […] Dietitians work on healthy eating for HD. They make recommendations on calorie counts, food and liquid alterations, and assist with proper feeding tube supplements (if appropriate). 1 […] Physical therapists develop exercise programmes and help with home preparedness and safety for the early stages of HD. […] Occupational therapists, if appropriate, do an assessment of the individuals workplace and their driving abilities in the early stages of HD. […] Neuropsychologists oversee the management of symptoms related to personality and cognitive changes in individuals with HD. […] Psychologists offer family support and counselling on matters relating to their relationships, grief and symptom management. […] Speech and language therapists will conduct a pre-emptive evaluation of swallow function and provide counselling about safe swallowing in the early stages of HD.

• #73 What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease: a position paper | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02622-8

  Huntingtons disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a persons functioning. […] The long progressive complex nature of the disease demands multiple disciplines for treatment and care of patient and family. […] These health care providers need inter- and multidisciplinary collaboration to persevere and be efficacious in this devastating disease trajectory. […] The complex nature of Huntington’s disease demands multidisciplinary treatment and care endorsed by international regulations and the lay association. […] Time needs to be invested in developing missing guidelines but the lack of this proof should not prevent the doing of good care. […] We believe that optimal care for this complex genetic disease cannot be provided by a single health care provider (HCP) but requires a comprehensive and multidisciplinary approach, adjusted to the patients’ and proxies individual needs and depending on the stage of the disease.

• #74 Nursing Care Plan For Huntington’s Disease  – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-huntingtons-disease/

  The care plan outlined above emphasizes the importance of providing person-centered care throughout the disease trajectory. By implementing evidence-based interventions that focus on mobility, swallowing, pain management, communication, psychosocial support, and caregiver education, nurses play a vital role in improving the overall quality of life for those living with HD. […] Nursing care plans for HD serve as a guide to delivering compassionate and effective care, tailored to the unique needs of each individual and their families. Through their expertise and commitment to enhancing the well-being of patients and caregivers, nurses play an indispensable role in supporting those impacted by HD on their challenging journey.

• #75 Huntington’s disease – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/diagnosis-treatment/drc-20356122

  It’s important to plan for care that will be needed in the advanced stages of the disease and near the end of life. Early discussions about care allow the person with Huntington’s disease to be engaged and to share what they want from their care. […] In-home nursing care or care in an assisted living facility or nursing home is needed during the advanced stages of the disease. […] Hospice services provide care at the end of life that helps a person approach death with as little discomfort as possible. This care also provides support and education to family members to help them understand the process of dying.

• #76 FF #201 Palliative Care for Patients with Huntington’s Disease | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-huntingtons-disease/

  Advance Care Planning Advanced care planning should be performed as early as possible, prior to cognitive impairment. Of particular importance is establishing a health care power of attorney, as well as documenting guidance to families for likely decisions they will face (such as tube feeding and mechanical ventilation). Some states require clear evidence that a patient would want tube feeding withheld or withdrawn at the end of life and patients should be instructed to document this if consistent with their wishes. […] Terminal Care There are no evidence-based criteria for determining a 6 month prognosis in HD; web-based reference 13, however, provides some guidance regarding hospice eligibility. A retrospective, multi-centered study of over 100 HD patients, suggested that the hospice length of stay is longer than non-HD hospice patients and only a significant minority of HD patients are able to die at home. Labored breathing, excessive secretions, and restlessness are common terminal symptoms.

• #77 Nursing Approaches and Perceived Quality of Life in Advanced Stage Huntington’s Disease Patients – PubMed

  https://pubmed.ncbi.nlm.nih.gov/35570495/

  Long-term Huntington’s disease (HD) care is offered in specialized inpatient nursing home units with a focus on individually perceived quality of life (QoL). […] Preservation of identity and autonomy is important for patients. Patients struggle with increasing dependence, and try to cope with the impact, uncertainty, and progressive nature of the disease. […] Both patients and family members mention the difficulty of dealing with altered behavior and loss of control. Patients are reliant on a relational approach, and an attitude of unconditional acceptance, trust, and understanding support by the nurses. […] Particular nursing approaches and attitude and qualifications of the nursing staff in residential HD care improves the perceived QoL of patients.

• #78 Nursing Care in Patients with Huntington’s Chorea-Case Report

  https://archhealthscires.org/en/nursing-care-in-patients-with-huntington-s-chorea-case-report-13243

  Huntingtons chorea is a neurodegenerative disease of autosomal dominant inheritance and presents with motor findings such as dystonia, psychiatric disorder, and progressive dementia. Nursing care is of crucial importance in cases with Huntingtons chorea because the disease has profound effects on the biological, physiological, socio-cultural, and economic domains. […] Thus, nurses who provide care for patients with Huntingtons chorea should know about the disease and its diagnosis and treatment and should be able to monitor complications and side effects related to care and treatment and plan and implement care interventions aimed at alleviating such complications and side effects. […] In this article, nursing care in patients with Huntingtons chorea was examined according to the phases of the nursing process, which are diagnosis, planning-nursing interventions, implementation, and assessment. In addition, it was aimed to draw attention to the importance of problems encountered by these patients and of nursing interventions.

• #79 Nursing Care Plan For Huntington’s Disease  – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-huntingtons-disease/

  The care plan outlined above emphasizes the importance of providing person-centered care throughout the disease trajectory. By implementing evidence-based interventions that focus on mobility, swallowing, pain management, communication, psychosocial support, and caregiver education, nurses play a vital role in improving the overall quality of life for those living with HD. […] Nursing care plans for HD serve as a guide to delivering compassionate and effective care, tailored to the unique needs of each individual and their families. Through their expertise and commitment to enhancing the well-being of patients and caregivers, nurses play an indispensable role in supporting those impacted by HD on their challenging journey.

• #80 Huntington’s Disease: A Nursing Perspective

  https://sciendo.com/article/10.21307/ajon-2021-007

  Huntingtons disease (HD) is an inherited neurodegenerative disorder caused by a CAG trinucleotide repeat expansion in the HTT gene. The motor, cognitive and psychiatric features of HD are progressive and complex, requiring specialised care by medical, nursing and allied health care professionals. […] This paper discusses the role of the HD nurse as a valuable resource to assess, provide, facilitate and educate on the specialised needs of those living with HD.

• #81 What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease: a position paper | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02622-8

  As Huntington’s disease presents a high complexity of symptoms, ranging from behavioural disorders to a variety of motor complaints to cognitive deficits, occurring in varying severity and changing during the course of the disease, multidisciplinary care and treatment are absolutely essential to meet the individual needs of patients and their families.

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