scholarly journals COVID-19’s Impact on Burden and Nutrition for Family Caregivers of People With Parkinson’s Disease

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 321-321
Author(s):  
Dara LoBuono ◽  
Rachel Robin ◽  
Mehmet Uygur
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Dietary Patterns ◽  
Online Survey ◽  
Well Being ◽  
Dietary Behaviors ◽  
Physical Strain ◽  
Snack Foods

Abstract The COVID-19 pandemic has worsened Parkinson’s disease (PD) symptoms; however how COVID-19 has impacted family caregivers of people with PD (PwPD) is unknown. A 38-item open-and closed-ended online survey that explored caregiver burden and nutrition behaviors during COVID-19 was completed by 34 caregivers. Quantitative variables related to how COVID-19 has impacted caregiver burden are reported as percentages. Responses to open-ended questions related to COVID-19’s impact on caregiver burden and dietary behaviors were double-coded by two researchers, differences in codes were discussed until consensus was reached, and themes were finalized. The mean age of caregivers was 67.2±8.7 (47-82 years of age) and the majority were female (64.7%). Since the COVID-19 pandemic, 61.7% of caregivers felt their relationship with their PwPD stayed the same or slightly improved, 41% reported having to make a slight or increased number of adjustments to their schedules to provide care and experienced a slight or increased physical strain because of providing care. 58.8% reported a slight or increased number of times they felt sad/hopeless and 76.5% reported a slight or increased number of times they felt anxious/worried. Themes related to COVID-19’s impacts on caregiver burden included: fear, stress, and isolation; increased caregiver responsibilities; no change in caregiving. Themes highlighting COVID-19’s impact on dietary behaviors included: healthier dietary patterns; increase in snack foods and boredom eating; no change in dietary patterns. Results suggest COVID-19 has negatively impacted caregiver well-being and further exploration in changes in dietary intake are warranted.

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.

Predictors of Spiritual Well-Being in Family Caregivers for Individuals with Parkinson's Disease

2021 ◽  
Author(s):  
Claire E. Koljack ◽  
Janis Miyasaki ◽  
Lindsay P. Prizer ◽  
Maya Katz ◽  
Nick Galifianakis ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Well Being ◽  
Spiritual Well Being

scholarly journals One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

2021 ◽  
Vol 11 (3) ◽  
pp. 295
Author(s):  
Martin Klietz ◽  
Hannah von Eichel ◽  
Theresa Schnur ◽  
Selma Staege ◽  
Günter U. Höglinger ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Well Being ◽  
Significant Difference ◽  
Male Caregivers ◽  
Study Population ◽  
One Year ◽  
The One ◽  
Gender Specific

Parkinson’s disease (PD) is a slowly progressive neurodegenerative movement disorder that leads to impairments in activities of daily living. In addition to reducing patients’ quality of life, this disease also affects caregivers’ well-being. Until recently, caregiver burden was mainly assessed by generic questionnaires, which do not take the characteristics of the chronic disease into consideration. In the case of PD, this issue has been addressed by the introduction of the “Parkinson’s disease caregiver burden” questionnaire (PDCB). Data on longitudinal trajectories of caregiver burden are still missing in the literature. In this study, we assessed the one-year trajectory of caregiver burden by the PDCB as a disease-specific questionnaire. Further, gender-specific aspects of caregiver burden were analyzed by applying a caregiver task questionnaire. PDCB total score (n = 84 patients and caregivers) did not significantly change from baseline (30.4) to one year at follow-up (31.5). No significant difference was detected between female and male caregivers in global burden and-specific caregiver tasks. Our data showed only a mild increase of caregiver burden in the timeframe of one year. Gender-specific differences do not seem to impact-specific caregiver tasks in the presented study population.

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.

Exploration of Parkinson’s Disease Symptomatology Subtypes From the Caregiver Perspective: Implications for Caregiver Burden, Depression, and Anxiety

2021 ◽  
pp. 089198872110491
Author(s):  
Sarah K. Lageman ◽  
Emily K. Donovan ◽  
Teresita Villaseñor ◽  
Paul B. Perrin
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Rating Scale ◽  
Caregiver Support ◽  
Patient Health ◽  
Disease Rating ◽  
Symptom Patterns ◽  
Caregiver Anxiety ◽  
The U.S

Background: While research has demonstrated associations between Parkinson’s disease (PD) severity and caregiver burden and emotional functioning, less is known about the associations between specific PD symptom patterns and caregiver functioning. Objective: The purpose of the current study was to explore symptomatology subtypes in PD from the caregiver perspective in the U.S. and Mexico and to determine whether caregiver burden, depression, or anxiety differed by PD symptomatology subtype. Methods: Two hundred fifty-three caregivers ( M age = 59.9) completed Parts I and II of the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS), the Zarit Burden Interview, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7 scales. Results: Cluster analysis using domains from the MDS-UPDRS revealed 5 symptomatology subtypes: pain/motor predominant, low symptoms, severe diffuse symptoms, moderate restricted symptoms with speech/oral predominant, and mood predominant. Caregiver burden was greatest for caregivers of individuals in the severe diffuse symptom and moderate restricted symptoms with speech/oral predominant clusters. High caregiver depression and caregiver anxiety were observed in all clusters other than the low symptoms cluster. There were no site by cluster interactions, suggesting that symptom patterns contribute to caregiver functioning in similar ways in the U.S. and Mexico. Conclusions: This data-driven analysis revealed 5 symptomatology subtypes of PD from caregivers’ perspectives and highlighted the need for treatments and interventions based on predominant PD symptom expression. Importance of caregiver support across various symptomatology expressions, and particularly on specialist treatment for predominant speech/oral difficulties was recommended.

scholarly journals The Impact of an Application of TelerehabilitationTechnology on Caregiver Burden

2009 ◽  
Vol 1 (1) ◽  
pp. 3-8 ◽  
Author(s):  
Lyn R. Tindall ◽  
Ruth A. Huebner
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Speech Therapy ◽  
Structured Interview ◽  
Elderly Persons ◽  
Work Time ◽  
Financial Obligation ◽  
The Impact ◽  
Therapy Protocol

The objective of this research was to assess the effects of an application of telerehabilitation reducing time and financial obligation on caregiver burden among eleven caregivers of elderly persons with Parkinson’s disease. Clients (care receivers) participated in speech therapy delivered via videophones in their homes; the protocol required 16 treatments delivered four times a week for four weeks. At the conclusion of treatment, caregivers completed a structured interview about the impact of telerehabilitation on time and financial aspects of the burden of care. On average, this speech therapy protocol delivered by videophones saved 48 hours of time, more than 92 hours of work time, and $1024 for each caregiver. Savings were significant and previous research demonstrated nearly equal outcomes using the videophone delivery method. Implications for practice and research are discussed. Keywords: Telerehabilitation, Speech Therapy, Parkinson’s Disease.  

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