Palliative Care in End-Stage Neurological Disease

2018 ◽  
Author(s):  
Tobias Walbert ◽  
Joel Phillips
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Symptom Management ◽  
Neurological Diseases ◽  
The United States ◽  
Pain Syndromes ◽  
End Stage ◽  
Chronic Course

Neurological disorders are among the leading causes of morbidity and death worldwide. Although stroke is the third leading cause of death, after heart disease and cancer, in the United States, other neurological diseases have a more chronic course that leads to protracted disability, morbidity, and death. Unfortunately, for many of these disorders, such as Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS), no cure is currently available. Patients suffer from dysarthria, dysphagia, muscle spasm, bladder and bowel difficulties, pain syndromes, and fatigue. Adequate symptom management and palliative care have the potential to maintain good quality of life for patients for as long as possible and ease the burden on both caregivers and patients. This chapter outlines the principles of clinical symptom management for some of the most important neurological diseases, specifically ALS, stroke, MS, and Parkinson’s disease.

scholarly journals Unmasking Parkinson’s Disease: The Relationship of Grit, Exercise, and Quality of Life

2020 ◽  
Vol 7 (6) ◽  
pp. 1732-1739
Author(s):  
Susan G Klappa ◽  
Julie A I Thompson ◽  
Stuart Blatt
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Support Groups ◽  
Physical Therapists ◽  
The United States ◽  
Community Based ◽  
Coping Responses ◽  
Home Based

The purpose of this study was to investigate grit, exercise, and quality of life (QOL) among individuals diagnosed with Parkinson’s disease (PD). A sample of convenience was used. A survey which included the grit scale, QOL scale, and open-ended questions was distributed to participants (n = 101, 51 male and 50 female) who are members of online PD support groups across the United States. Data were analyzed by SPSS 25. Grit values averaged 3.65 ± 0.51 for participants (n = 101). When divided into groups, mean grit score for community-based exercisers was 3.78 ± 0.42 and 3.10 ± 0.48 for home-based exercisers. Grit was positively correlated to higher QOL on the Parkinson’s disease quality of life (PDQL; r = +0.293, P = .004). Grit was positively correlated to the emotional component of the PDQL ( r = +0.462, P < .001). Participants with higher grit levels had higher emotional coping responses after being diagnosed with PD, exercised more, and were more willing to self-advocate. With limited rehabilitation visits allowed, physical therapists should be aware of community-based programs to redefine participation roles after diagnosis.

Nursing Research in Parkinson’s Disease From 2006 to 2015

2016 ◽  
Vol 26 (2) ◽  
pp. 142-156 ◽  
Author(s):  
Ju Young Shin ◽  
Barbara Habermann
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregiving ◽  
Symptom Management ◽  
Family Members ◽  
Theoretical Models ◽  
Self Management ◽  
Nursing Research

Most people with Parkinson’s disease (PD) reside in their homes with their family members. Nurses are in a good position to partner with people with PD and their family members for better self-management of the disease and improved quality of life. The purpose of this systematic review was to assess the state of the science of nursing research related to PD during the 10-year period, 2006 to 2015. A total of 27 studies were included in this review. Family caregiving was the most studied topic, followed by symptom management/medication adherence, quality of life, end-of-life/palliative care, and functional status/improving function. Recommendations for future studies in PD include (a) developing and testing interventions based on theoretical models in the areas of self-management, symptom management, and function improvement in people with PD and for caregivers caring for people with advanced stage PD, and (b) building programs of research with interprofessional teams.

scholarly journals Efficacy of osteopathic manipulative treatment in patients with Parkinson’s disease: a narrative review

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Raymond Li ◽  
Ann Jose ◽  
Jessica Poon ◽  
Cindy Zou ◽  
Maria Istafanos ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Motor Function ◽  
Manual Therapy ◽  
Symptom Management ◽  
Future Research ◽  
Osteopathic Manipulative Treatment ◽  
Literature Searches

Abstract Context Parkinson’s disease (PD) is a neurodegenerative disease that leads to impaired motor and non-motor function in patients. PD is non-curative and gradually reduces quality of life, leading patients to seek treatment for symptom management. Osteopathic manipulative treatment (OMT) applies the biomechanical, neurologic, circulatory, metabolic, and psychosocial models in approaching and treating the major symptomatology of PD patients. Objectives This article evaluates the literature published in the past 10 years analyzing evidence on OMT and its functional application on gait, balance, motor function, bradykinesia, and autonomic dysfunctions, and to identify promising avenues for further investigation. Methods The authors obtained studies from the research databases MEDLINE/PubMed, ScienceDaily, and EBSCO, as well as the Journal of American Osteopathic Association’s published archives. Searches were conducted in December 2020 utilizing the search phrases “OMM” (osteopathic manipulative medicine), “OMT,” “osteopathic,” “Parkinson Disease,” “manual therapy,” “physical therapy,” “training,” “autonomics,” “gait,” and “balance.” Articles published between 2010 and 2021 including subjects with Parkinson’s disease and the use of OMT or any other form of manual therapy were included. Five authors independently performed literature searches and methodically resolved any disagreements over article selection together. Results There were a total of 10,064 hits, from which 53 articles were considered, and five articles were selected based on the criteria. Conclusions The progressive nature of PD places symptom management on the forefront of maintaining patients’ quality of life. OMT has demonstrated the greatest efficacy on managing motor-related and neurologic symptoms and assists in treating the greater prevalence of somatic dysfunctions that arise from the disease. Research in this field remains limited and should be the target of future research.

scholarly journals Effectiveness of non-pharmacological falls prevention interventions for people with Multiple Sclerosis, Parkinson’s Disease and stroke: protocol for an umbrella review

2020 ◽  
Vol 3 ◽  
pp. 17
Author(s):  
Nicola O'Malley ◽  
Amanda M. Clifford ◽  
Laura Comber ◽  
Susan Coote
Keyword(s):  
Multiple Sclerosis ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Systematic Reviews ◽  
Neurological Diseases ◽  
Evaluation Framework ◽  
Falls Prevention ◽  
Umbrella Review ◽  
Prevention Interventions

Background: Falls are common among people with neurological diseases and are associated with many negative physical, psychosocial and economic consequences. Implementation of single diagnosis falls prevention interventions is currently problematic due to lack of participants and resources. Given the similarities in falls risk factors across stroke, Parkinson’s Disease (PD) and Multiple Sclerosis (MS), the development of an intervention designed for mixed neurological populations seems plausible and may provide a solution to current implementation challenges. This umbrella review aims to summarise the totality of evidence regarding the effectiveness of non-pharmacological falls prevention interventions for people with MS, PD and stroke and to identify the commonalities and differences between interventions that are effective for each disease to inform the development of an intervention for mixed diagnoses. Methods: This umbrella review will be conducted and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Electronic databases and grey literature will be searched. Systematic reviews of randomised controlled trials (RCTS) and studies investigating the effects of non-pharmacological falls prevention interventions on falls outcomes among people with MS, PD and stroke will be included. Methodological quality of included reviews will be assessed using the Assessment of Multiple Systematic Reviews 2 tool. The Grading of Recommendations Assessments, Development and Evaluation framework will be used to rate the quality of evidence. A summary of evidence table and narrative synthesis will be utilised to clearly indicate the findings. Discussion: This umbrella review presents a novel and timely approach to synthesise existing falls literature to identify effective non-pharmacological interventions for people with MS, PD and stroke. Of importance, this umbrella review will use a robust methodology to explore the key differences and similarities in effective interventions for individuals with these neurological diseases to facilitate the development of an intervention for mixed neurological groups.

“Running Water Won't Freeze”: How people with advanced Parkinson's disease experience occupation

2014 ◽  
Vol 13 (5) ◽  
pp. 1363-1372 ◽  
Author(s):  
Carolyn Murdock ◽  
Wendy Cousins ◽  
W. George Kernohan
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Occupational Therapy ◽  
Research Network ◽  
Daily Lives ◽  
Advanced Parkinson’S Disease ◽  
Disease Experience

AbstractObjective:Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.Method:Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.Results:The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.Significance of Results:Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

scholarly journals “No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

2021 ◽  
pp. 1-13
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Jenny T. van der Steen ◽  
Marten Munneke ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Disease Burden ◽  
Mixed Methods Case Study ◽  
Palliative Phase

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

Palliative care in non-malignant neurological disease

2019 ◽  
pp. 619-636
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Multiple System Atrophy ◽  
Neurodegenerative Disorder ◽  
Neurological Diseases ◽  
Urogenital Dysfunction ◽  
Jakob Disease ◽  
The Central Nervous System ◽  
Incomplete Bladder Emptying

This chapter covers the palliative care aspects of non-malignant neurological diseases, including multiple sclerosis, Parkinson’s disease, motor neurone disease, multiple system atrophy, progressive supranuclear palsy, and Creutzfeldt–Jakob disease. MS is a disease characterized by inflammation and demyelination affecting the central nervous system and ultimately injury and gliosis. Parkinson’s disease (PD) is the commonest neurodegenerative disease after Alzheimer’s disease, with an estimated incidence of 2/1000. It affects just under 1% of people over the age of 65 years. PD is probably not one disease but several with common clinical features. Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by Parkinsonian features, plus autonomic dysfunction in the form of orthostatic hypotension, and/or urogenital dysfunction in the form of incontinence and incomplete bladder emptying. At times it can also include cerebellar symptoms. It is not hereditary, and affects adults usually in the fourth or fifth decade. Post-mortem studies of patients diagnosed with PD indicate that 10–25% had multiple system atrophy.

oes Palliative Care Improve Quality of Life for People with Parkinson's Disease and Reduce Caregiver Burden?

2020 ◽  
Author(s):  
Benzi Kluger ◽  
Jean Kutner ◽  
Stefan Sillau ◽  
Diane Fairclough ◽  
Jacqueline Jones ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Improve Quality
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