Neurological disorders other than dementia

2021 ◽  
pp. 996-1003
Author(s):  
Raymond Voltz ◽  
Stefan Lorenzl
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Neurological Disorders ◽  
Symptom Management ◽  
Scientific Evidence ◽  
High Rate ◽  
Positive Effects ◽  
Care Approach ◽  
Lateral Sclerosis

The significance of a palliative care approach for patients with neurological disorders other than dementia, such as patients with amyotrophic lateral sclerosis, was recognized by Dame Cicely Saunders in her conceptualization of hospice and is increasingly supported by scientific evidence. From the clinical perspective, the need for palliative care is underscored by the high rate of requests for hastening death. This chapter describes palliative care approaches for a number of neurological disorders other than dementia. For amyotrophic lateral sclerosis, the literature has focused on the management of respiratory insufficiency and malnutrition. For patients with multiple sclerosis, the first randomized controlled trials of palliative care show positive effects on symptoms and healthcare utilization. For populations with parkinsonian syndromes, the literature discusses many interventions that can reduce suffering and improve quality of life. This literature is summarized and specific recommendations for symptom management are presented.

Neurological disorders other than dementia

2015 ◽  
Author(s):  
Raymond Voltz ◽  
Stefan Lorenzl ◽  
Georg Nübling
Keyword(s):  
Palliative Care ◽  
Neurological Disorders ◽  
Controlled Trial ◽  
Scientific Evidence ◽  
Care Needs ◽  
Specific Symptom ◽  
Positive Effects ◽  
Care Approach ◽  
Palliative Care Needs ◽  
Lateral Sclerosis

The significance of a palliative care approach for patients with neurological disorders other than dementia is increasingly recognized. Whereas the care for these patients, for example, those with amyotrophic lateral sclerosis (ALS) or motor neuron disease, had been incorporated in the initial concept by Dame Cicely Saunders, recent scientific evidence supports this position. The need for palliative care in these patients is underpinned by their frequent wish for hastening death. This chapter describes palliative care approaches for a number of neurological disorders other than dementia. For ALS, palliative care management including specific issues such as respiratory insufficiency or malnutrition are fairly well established. Also, in parkinsonian syndromes, a lot of palliative care needs can be recognized and managed effectively. For patients with multiple sclerosis, the first randomized controlled trial showed clearly positive effects on symptoms as well as usage of health-care resources. The chapter also summarizes the drug use for specific symptom management, accounting for alternative application routes.

The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

2021 ◽  
pp. 104990912110493
Author(s):  
Anish Sethi ◽  
Elyse Everett ◽  
Ambereen Mehta ◽  
Jessica Besbris ◽  
Christa Burke ◽  
...  
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neurons ◽  
Symptom Management ◽  
Medical Specialty ◽  
Care Needs ◽  
Discussion Section ◽  
Caregiver Support ◽  
Hard Times ◽  
Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

scholarly journals Current issues in the respiratory care of patients with amyotrophic lateral sclerosis

2015 ◽  
Vol 73 (10) ◽  
pp. 873-876 ◽  
Author(s):  
Marco Orsini ◽  
Agnaldo José Lopes ◽  
Sara Lucia Silveira de Menezes ◽  
Acary Bulle Oliveira ◽  
Marcos Raimundo Gomes de Freitas ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Vital Capacity ◽  
Peak Flow ◽  
Respiratory Care ◽  
Airway Clearance ◽  
Care Approach ◽  
Pulmonary Volumes ◽  
Lateral Sclerosis ◽  
Sniff Nasal Inspiratory Pressure

Amyotrophic lateral sclerosis is a progressive neuromuscular disease, resulting in respiratory muscle weakness, reduced pulmonary volumes, ineffective cough, secretion retention, and respiratory failure. Measures as vital capacity, maximal inspiratory and expiratory pressures, sniff nasal inspiratory pressure, cough peak flow and pulse oximetry are recommended to monitor the respiratory function. The patients should be followed up by a multidisciplinary team, focused in improving the quality of life and deal with the respiratory symptoms. The respiratory care approach includes airway clearance techniques, mechanically assisted cough and noninvasive mechanical ventilation. Vaccination and respiratory pharmacological support are also recommended. To date, there is no enough evidence supporting the inspiratory muscle training and diaphragmatic pacing.

Effects of prolonged interruption of rehabilitation routines in amyotrophic lateral sclerosis patients

2021 ◽  
pp. 1-6
Author(s):  
Filipe Gonçalves ◽  
Bruno Magalhães
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Rating Scale ◽  
Negative Impact ◽  
Short Form ◽  
Physical Symptoms ◽  
Rank Test ◽  
Lateral Sclerosis

Abstract Objective Patients with amyotrophic lateral sclerosis (ALS) experienced prolonged interruption of their rehabilitation palliative care routines due to restrictive COVID-19 pandemic public health measures. This study assesses the effects of before and after the lockdown on functionality rates and quality of life (QoL) in patients with ALS. Methods A longitudinal observational study was conducted. Participants were assessed three times — early January (T0), before mandatory lockdown (T1), and during lockdown (T2) — using the ALS Functional Rating Scale-revised (ALSFRS-R), Fatigue Severity Scale (FSS), and the ALS-Specific Quality of Life-Short Form (ALSSQOL-SF). The paired-sample t-test and Wilcoxon signed-rank test were used. Results Thirty-two patients were included with a mean age of 56.9 (SD 14.2) years and mean symptoms onset of 27.1 (SD 14.3) months. ALSFRS-R mean scores decayed significantly over time when comparing T0–T1 (0.26 ± 0.38) and T1–T2 (1.36 ± 1.43) slopes (p < 0.001). Significant differences were observed between T1 and T2 for ALSSQOL-SF scores (115.31 ± 17.06 vs. 104.31 ± 20.65), especially in four specific domains, and FSS scores (34.06 ± 16.84 vs. 40.09 ± 17.63). Negative correlations between negative emotions and physical symptoms assessed by ALSSQOL-SF and FSS were found. Significance of the results Rehabilitation treatment routines in palliative care, such as physiotherapy and speech therapy, appear to mitigate the ALSFRS-R slope. Prolonged interruption of rehabilitation during the lockdown may have accelerated the functional decline in ALS patients’ motor skills with as measured after 2 months by the ALSFRS-R in the limb and bulbar subscores, but not respiratory subscore. Other short-term effects, increased fatigue and negative impact on QoL, were also verified.

scholarly journals Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis

Neurology ◽  
2018 ◽  
Vol 91 (3) ◽  
pp. e258-e267 ◽  
Author(s):  
Jonathan R. Wolpaw ◽  
Richard S. Bedlack ◽  
Domenic J. Reda ◽  
Robert J. Ringer ◽  
Patricia G. Banks ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Brain Computer Interface ◽  
Computer Interface ◽  
It Use ◽  
Technical Problems ◽  
Rapid Disease Progression ◽  
And Performance ◽  
Lateral Sclerosis

ObjectiveTo assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months.MethodsOf 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28–79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life.ResultsOver subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use.ConclusionThe Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.

Quality-of-Life Assessments That Can Be Used for Patients Diagnosed With Amyotrophic Lateral Sclerosis: A Scoping Review

2021 ◽  
Vol 75 (Supplement_2) ◽  
pp. 7512500033p1
Author(s):  
Addie Broom ◽  
Hannah Prescott ◽  
Mallorie Savage ◽  
Addie Broom ◽  
Emily Crawford ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Scoping Review ◽  
Lateral Sclerosis
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