The well‐being and burden of caregiving for patients with Parkinson’s disease

2021 ◽  
Author(s):  
Francesca Vescovelli ◽  
Chiara Ruini
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Well Being

scholarly journals Impact of Depression and Anxiety on Dimensions of Health-Related Quality of Life in Subjects with Parkinson’s Disease Enrolled in an Association of Patients

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychiatric Symptoms ◽  
Well Being ◽  
Depression And Anxiety ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

scholarly journals How COVID-19 will boost remote exercise-based treatment in Parkinson’s disease: a narrative review

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Agnes Langer ◽  
Lucia Gassner ◽  
Anna Flotz ◽  
Sebastian Hasenauer ◽  
Jakob Gruber ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Best Practice ◽  
Well Being ◽  
Functional Mobility ◽  
Physical Mobility ◽  
Conventional Physiotherapy ◽  
Difficult Times ◽  
Non Motor Symptoms

AbstractThe lack of physical exercise during the COVID-19 pandemic-related quarantine measures is challenging, especially for patients with Parkinson’s disease (PD). Without regular exercise not only patients, but also nursing staff and physicians soon noticed a deterioration of motor and non-motor symptoms. Reduced functional mobility, increased falls, increased frailty, and decreased quality of life were identified as consequences of increased sedentary behavior. This work overviews the current literature on problems of supplying conventional physiotherapy and the potential of telerehabilitation, allied health services, and patient-initiated exercise for PD patients during the COVID-19 period. We discuss recent studies on approaches that can improve remote provision of exercise to patients, including telerehabilitation, motivational tools, apps, exergaming, and virtual reality (VR) exercise. Additionally, we provide a case report about a 69-year-old PD patient who took part in a 12-week guided climbing course for PD patients prior to the pandemic and found a solution to continue her climbing training independently with an outdoor rope ladder. This case can serve as a best practice example for non-instructed, creative, and patient-initiated exercise in the domestic environment in difficult times, as are the current. Overall, many recent studies on telemedicine, telerehabilitation, and patient-initiated exercises have been published, giving rise to optimism that facilitating remote exercise can help PD patients maintain physical mobility and emotional well-being, even in phases such as the COVID-19 pandemic. The pandemic itself may even boost the need to establish comprehensive and easy-to-do telerehabilitation programs.

scholarly journals Tango Therapy: Current Status and the Next Perspective

2018 ◽  
Vol 3 (8) ◽  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Dance Therapy ◽  
Well Being ◽  
Medical Application ◽  
Whole Body ◽  
Current Status ◽  
Argentine Tango ◽  
Systemic Analysis ◽  
Health And Well Being

Dance is basically a complex physical activity which either casually or formally organized in which people take part for fitness, health and well-being, social relationships or competition and a worldwide human activity that involves complex whole body movements through space synchronized to music. Dance-related reviews of evidence have examined the effectiveness of dance therapy on psychological and physical health and well-being outcomes in patients with cancer, for schizophrenia, and on depression. Dance therapy was officially described firstly in 1948. The medical application of dance therapy was well reviewed in neurologic conditions. Dance has been used extensively for the treatment of gait and balance dysfunction in individuals with Parkinson’s disease. Especially, Argentine tango is the most frequently employed dance form in the treatment of Parkinson’s disease. Tango therapy may hold promise as an intervention to improve gait, balance, and mobility in a variety of neurological conditions. Tango therapy was approached from dance therapy to the current status of medical application. A more systemic analysis of tango movement for proper and effective therapeutic application of tango is necessary for medical purposes.

scholarly journals Thinking positively about chronic illness: An exploration of optimism, illness perceptions and well-being in patients with Parkinson's disease

2013 ◽  
Vol 19 (2) ◽  
pp. 363-379 ◽  
Author(s):  
Catherine S. Hurt ◽  
David J. Burn ◽  
John Hindle ◽  
Mike Samuel ◽  
Ken Wilson ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Chronic Illness ◽  
Illness Perceptions ◽  
Well Being

scholarly journals Sicca Symptoms in Parkinson’s Disease: Association with Other Nonmotor Symptoms and Health-Related Quality of Life

2020 ◽  
Vol 2020 ◽  
pp. 1-7
Author(s):  
Tino Prell ◽  
Denise Schaller ◽  
Caroline Perner ◽  
Otto W. Witte ◽  
Julian Grosskreutz
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Well Being ◽  
Nonmotor Symptoms ◽  
Yahr Stage ◽  
Autonomic Symptoms ◽  
Related Quality ◽  
Health Related ◽  
Sicca Symptoms

Background. Frequently used nonmotor scales do not cover all aspects of dysautonomia in Parkinson’s disease (PD). This study explores the association between autonomic symptoms and sicca symptoms with other nonmotor symptoms and health-related quality of life (QoL) in PD. Methods. Autonomic symptoms (Survey of Autonomic Symptoms, SASs), motor function (Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale III, MDS-UPDRS III), nonmotor symptoms (nonmotor symptoms questionnaire, NMS-Quest), and QoL (PD Questionnaire-39, PDQ-39) were analysed in 93 PD patients without dementia. Multivariable and multivariate analyses were performed to study the association between clinical parameters and PDQ-39 domains. Results. Among the autonomic symptoms, sicca symptoms (xerostomia and dry eyes) were the most commonly reported (69%), followed by sexual dysfunction in men, leaking of urine, vasomotor dysfunction, constipation, sudomotor dysfunction, and orthostatic symptoms. The autonomic symptom burden (SAS total) correlated with the NMS-Quest and Hoehn and Yahr stage, but not with age, levodopa equivalent daily dose, disease duration, and the MDS-UPDRS III. The SAS total score was an independent predictor of the PDQ-39 summary index and mainly affected the PDQ-39 cognition and emotional well-being domains. Sicca symptoms were not associated with age, MDS-UPDRS III, disease duration, Hoehn and Yahr stage, and levodopa equivalent daily dose but aggravated the PDQ-39 domains: cognition, emotional well-being, bodily discomfort, and mobility. Sicca symptoms frequently occur together with other nonmotor symptoms, namely, urine urgency, orthostatic problems, and concentration problems. Overall, 75% of the subjects took at least one drug that can cause sicca symptoms (anti-PD medication, antidepressant drugs, antihypertensive drugs, antipsychotic drugs, antimuscarinic drugs, and analgesic drugs). Conclusion. Sicca symptoms are common in PD and negatively influence QoL. The observed association between sicca symptoms and other nonmotor symptoms provides further preliminary evidence for the growing recognition of different nonmotor clusters in PD.

scholarly journals A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey

2020 ◽  
Vol 11 ◽  
Author(s):  
Katie McGoohan ◽  
Anneesa Amjad ◽  
Natasha Ratcliffe ◽  
Sagnik Bhattacharyya ◽  
Gillian Granville ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Trials ◽  
Clinical Research ◽  
Online Survey ◽  
Preliminary Investigation ◽  
Well Being ◽  
Support Network ◽  
Ongoing Research ◽  
Related Research

Background: The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson's disease.Objectives: A preliminary investigation to explore the views of Parkinson's disease (PD) patients, with and without experience of psychosis symptoms, and carers on the resumption of clinical research and adaptations to trials in light of COVID-19.Methods: An anonymous self-administered online survey was completed by 30 PD patients and six family members/carers via the Parkinson's UK Research Support Network to explore current perceptions on taking part in PD research and how a planned clinical trial for psychosis in PD may be adapted so participants feel safe.Results: Ninety-one percent of respondents were enthusiastic about the continuation of non-COVID-19 related research as long as certain safety measures were in place. Ninety-four percent stated that they would be happy to complete assessments virtually. However, they noted that care should be taken to ensure that this does not exclude participants, particularly those with more advanced PD who may require assistance using portable electronic devices. Regular and supportive communication from the research team was also seen as important for maintaining the psychological well-being of participants while taking part in the trial.Conclusions: In the era of COVID-19 pandemic, standard approaches will have to be modified and rapid adoption of virtual assessments will be critical for the continuation of clinical research. It is important that alongside the traditional methods, new tools are developed, and older ones validated for virtual assessments, to allow safe and comprehensive assessments vital for ongoing research in people with Parkinson's.

scholarly journals Parkinson's disease: Impact of clinical and cognitive aspects on quality of life

2010 ◽  
Vol 4 (2) ◽  
pp. 131-137 ◽  
Author(s):  
Glória Maria Almeida Souza Tedrus ◽  
Lineu Correa Fonseca ◽  
Patrícia Mencaroni Kange
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Rating Scale ◽  
Signs And Symptoms ◽  
Well Being ◽  
Maternity Hospital ◽  
Related Factors ◽  
Significance Level

Abstract Parkinson's disease (PD) is a chronic disease manifested principally by motor signs and symptoms, but with frequent neuropsychological alterations. Objectives: To study the relationship between clinical and cognitive aspects and the perception of quality of life (QOL) in PD patients. Methods: Twenty consecutive patients (13 men) with idiopathic PD (mean age: 64.5y), mean disease time of 7.8 years and at stages 1-3 according to the modified Hoehn and Yahr staging scale (HYS), all outpatients from the Neurology Department of the Celso Pierro General and Maternity Hospital (PUC-Campinas), were analyzed. The following were applied: a clinical-neurological assessment, the Mini-Mental State Examination (MMSE), standard neuropsychological battery of the CERAD (Consortium to Establish a Registry for Alzheimer's Disease), Hamilton Depression Rating Scale (HAM-D) and a QOL questionnaire (Parkinson's Disease Questionnaire - PDQ-39). Statistical analysis was carried out at a significance level of p<0.05. Results: On the PDQ-39 under the sections total, mobility and activities of daily living, and the items motor compromise (HYS) and language of the MMSE were predictors of worse QOL. Verbal fluency was a factor for emotional well-being on the PDQ-39, whereas higher scores for HAM-D and worse performance on the item attention and calculation of the MMSE were associated with worse QOL in the social support section. Total score on the MMSE and educational level were QOL factors in cognition Conclusions: The findings of the present study suggest that clinical, cognitive, motor or other depression-related factors contribute differently to the domains of QOL.

The importance of support and forms of kinesiotherapeutic activity of family members of persons affected by Parkinson’s disease

2019 ◽  
Vol 6 (1) ◽  
pp. 1-7
Author(s):  
Aleksandra Wróbel ◽  
Piotr Wróbel ◽  
Ewa Otfinowska
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Support ◽  
Family System ◽  
Well Being ◽  
Entire Family ◽  
Permanent Disability ◽  
The Impact

Parkinson’s disease is a chronic and progressive degenerative disease of the central nervous system. The disorder is classified as extra pyramidal system diseases. In order to improve the patient’s condition and increase the level of quality of life, pharmacological treatment and rehabilitation are used to eliminate progressive disability. The help of the surrounding environment affects not only the course of the disease, but above all the emotional well-being of the patient. Family support and its participation in the whole therapeutic process greatly optimize its results. The aim of this work is to present the most important issues regarding kinesiotherapy in Parkinson’s disease and to demonstrate the impact of the involvement of the whole family system on the course and results of therapy. Kinesiotherapy as an element of treatment plays a very important role in the process of improving and adapting the patient to perform daily nursing activities. Kinesiotherapeutic treatments have not only a significant impact on the symptoms occurring in the course of the disease, but also on the overall health. The individual selection of therapy and the involvement of the entire team of therapists is extremely important in eliminating both movement and extrinsic symptoms. The correct implementation of the physiotherapist’s recommendations, the patient’s involvement, as well as the active participation of the patient’s environment, is a condition for the effectiveness of the entire process of maintaining health and fitness. Kinesiotherapy prevents permanent disability and helps maintain the longest possible independence and good quality of life. The involvement of the entire family support system has an impact on the results of the therapy.

Perceived benefits for informal caregivers after an 8-week yoga intervention for people with Parkinson’s disease

2018 ◽  
Vol 16 (4) ◽  
pp. 23
Author(s):  
Alysha A. Walter, MS, CTRS ◽  
Marieke Van Puymbroeck, PhD, CTRS, FDRT ◽  
Brent L. Hawkins, PhD, LRT/CTRS ◽  
Kathleen Woschkolup, MD ◽  
Enrique Urrea-Mendoza, MD ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Depressive Symptoms ◽  
Well Being ◽  
Future Research ◽  
Small Data ◽  
Yoga Intervention ◽  
Unpaid Care ◽  
Post Test ◽  
Positive Aspects Of Caregiving

An informal caregiver (ICG) is a family member and/or friend who provides unpaid care to an individual with a disability or chronic disease. ICGs often put their healthcare second while caring for their loved ones; and this may lead to negative impacts on their well-being. ICGs attended an 8-week therapeutic yoga intervention for their care recipients with Parkinson’s disease. ICGs who participated in the yoga classes were assessed utilizing a retrospective pretest and traditional post-test to determine the presence of depressive symptoms and positive aspects of caregiving. Although the sample size was small, data revealed improvements in depressive symptoms and positive aspects of caregiving. Focus group and individual interview data revealed five qualitative categories: yoga engagement, relationship improvement, psychological improvements, functional improvements, and community engagement. Future research should expand participation of ICGs in yoga trials to determine the extent of changes in psychosocial well-being.

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