Search

Background: Parkinson's disease (PD) increases patient load and requirements of care. Determining the burden on PD patients' caregivers and associated factors may help to identify methods to reduce caregiver burden. This study investigated the factors associated with caregiver burden among PD patients caregivers., Methods: Eighty-five PD patients and 85 caregivers were included in the study. Zarit Burden Interview (ZBI) was used to measure caregiver burden; the Ways of Coping Scale (WCS) was used for coping; Modified Hoehn-Yahr Staging (MHYS) was used for staging patients. The International Parkinson and Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS) parts 1 and 3 were used to evaluate non-motor and motor problems. Caregivers' depression and anxiety levels were evaluated with the Beck Depression Inventory and Beck Anxiety Inventory (BAI). Spearmen correlation coefficient was used to evaluate the relationship of variables with the ZBI score, and multiple linear regression analysis was used to determine the predictors of the ZBI score., Results: A positive significant relationship was found between the ZBI score and BAI score, MHYS score, WCS total score, and subscales: keeping to self, seeking refuge in fate, and seeking refuge in supernatural forces. MHYS score, WCS total score, BAI score, and MDS-UPDRS-1 were predictors of the ZBI score., Conclusions: The anxiety levels of caregivers, their ways of coping, and the patient's stage of the disease are important in caregiver burden. Coping ways can be changed to reduce the care burden. Developing psychological interventions for caregivers to change their coping styles can be important., (© 2024 Japanese Psychogeriatric Society.)

Abstract: BACKGROUND: For people with a moderate stage of Parkinson disease (PD), dedicated care coordination combined with advance care planning (ACP) is highly needed. However, evidence is lacking. The objective of this study was to assess the feasibility and acceptability of the study processes to inform a larger randomized controlled trial, aiming the effectiveness of a combined intervention on ACP and care coordination for people with PD. METHODS: Two nurse practitioners with expertise in PD followed training on a combined intervention on ACP and care coordination. Patients were invited to participate in several sessions for a period of 12 months. Feasibility of the study was surveyed covering sample recruitment, attrition rate, eligibility, intervention delivery, number of ACP sessions, type of intervention administration, and satisfaction with the intervention. RESULTS: In total, 27 patients were invited to participate, and 20 (74%) enrolled into the study, together with 11 family caregivers; 7 patients (35%) dropped out. Most patients were men (n = 20), with a mean age of 73.4 (SD 8.2) years. In total, 71 ACP sessions were held (3.6 sessions per patient on average), of which 41% of the sessions were conducted face-to-face at home, 44% at the hospital, 11% over telephone, and 4% via a videoconference call. Patients perceived the intervention not only as supportive but also as confronting. CONCLUSION: The ACP aspect of the intervention was useful and feasible to stimulate patients to think about their current care situation as well as about future care. Care coordination was less profoundly provided and discussed., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2024 American Association of Neuroscience Nurses.)

Competing Interests: Competing interests: None declared.

Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving., Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving., Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16) . Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes., Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress . Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management ; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth., Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Parkinson's disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson's disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers., Objective: To describe the lived experience of wife caregivers of male spouses living at home with Parkinson's disease., Methods: A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi's method., Results: Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul's growth, to support the central theme "there is no cure for caregiving.", Conclusion: Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.

Background: Parkinson's disease (PD) is a disabling neurodegenerative movement disorder. Most PD patients are looked after by caregivers who are close to them regardless of their relationship. Caregivers may experience a notable impact on their mental health as they dedicate a significant amount of time to the patient while observing the progression of the disease., Objective: The aim of this study was to evaluate the level of burden, depression, anxiety, and stress among caregivers of PD patients., Methods: We conducted a cross-sectional analysis between July and September 2023 among caregivers of PD patients following in the Movement Disorders Clinic at King Khalid University Hospital in Riyadh, Saudi Arabia, and through the Saudi Parkinson's Society. The data collection was done anonymously through an electronic self-administered questionnaire. Caregiver burden was assessed by using the validated Arabic version of the Zarit Burden Interview (ZBI) scale, and the Depression Anxiety Stress Scale (DASS) was used to assess the presence and level of anxiety and depression., Results: There were 118 caregivers (53.39% female, 33.9% aged between 35- 45 years, and 73.73% were sons/daughters) caring for 118 patients (57.63%, male, 38.98% aged between 66- 76). The ZBI score was highest among sibling caregivers. Moreover, burden scores were higher among those who provided care more frequently than others., Conclusions: Our study revealed that PD caregivers face a high risk of care burden, especially those who are siblings and spend longer periods in patient care. Additionally, female caregivers reported higher rates of depression, anxiety, and stress.

Abstract: BACKGROUND: Depression and anxiety are common but underrecognized and undertreated nonmotor symptoms of Parkinson disease (PD) due to their diagnostic criteria overlapping with other PD symptoms, limited randomized controlled studies in this specific population, and the need for multidisciplinary expertise. The purpose of this article is to offer evidence-based solutions for managing comorbid depression and anxiety in patients with PD through a case study analysis. CASE STUDY: A case study is used to illustrate the somatic manifestations of anxiety in PD that leads to diagnostic challenge and multidisciplinary management. MANAGEMENT CONSIDERATIONS: The appropriate use of screening tools, pharmacological and nonpharmacological management, and education are important interventions to consider when treating depression and anxiety in PD. CONCLUSION: Effective management requires accurate assessments, individualized treatment modalities, and patient education. Nurses who are knowledgeable about the effects and management of mood disorders in PD can play an integral role in the multidisciplinary team approach for assessment, patient and caregiver education, and treatment plan implementation., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2021 American Association of Neuroscience Nurses.)

Background: The purpose of this experiment is to evaluate the impact of the care of Parkinson disease nurse specialist on improving motor symptoms and life quality for patients with Parkinson disease (PD)., Method: This is a randomized controlled research, and it will be conducted from April 2021 to October 2021 at Sichuan Provincial People's Hospital. The experiment was granted through the Research Ethics Committee of Sichuan Provincial People's Hospital (004510293). All the patients suffer from PD, age 18 years or older, both female and male, regardless of the duration or severity of this disease are eligible. The exclusion criteria contains: lack sufficient knowledge to complete questionnaires, serious physical comorbidities or refuse to take part in the program. In our experiment, the major result measures are motor symptoms and life quality. For the measurement of life quality, we will utilize Parkinson disease Questionnaire-39, the most extensively utilized the scale of life quality in PD. The evaluation of motor symptoms severity is carried out with the revision of Unified Parkinson Disease Rating Scale sponsored by Movement Disorder Society., Results: Table 1 indicates clinical outcomes at different time points., Conclusion: The Parkinson's disease nurse specialist care may promote the life quality in the PD patients., Trial Registration Number: researchregistry 6284., Competing Interests: The authors report no conflicts of interest., (Copyright © 2021 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected the mental health of the general population., Objective: We investigated the determinants of quality of life (QOL) in Parkinson's disease (PD) patients during the COVID-19 pandemic., Methods: Impacts of lifestyle changes due to the COVID-19 pandemic on 100 patients with PD and their caregivers/spouses were assessed. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression. The physical component summary (PCS) and mental component summary (MCS) scores of the short form (SF)-8 were used to evaluate health-related QOL., Results: Regarding health-related QOL, physical function, role physical, general health, vitality and the PCS score were significantly worse in PD patients than in caregivers. Worsening of PD-related symptoms, increased stress, and decreased physical activity were observed in 29.0%, 37.0% and 44.0% of PD patients, respectively. Sixteen patients (16.0%) experienced problems with hospital access, but none reported medication shortages. Strong concerns about COVID-19 were reported by 47.0% of caregivers and 50.0% of PD patients. In PD patients, increased gait disturbance and rigidity, disease severity, smoking, the levodopa equivalent dose and decreased body weight predicted a worse PCS score; anxiety, depression, female sex, stress and long disease duration predicted a worse MCS score. In caregivers, age and smoking contributed to a worse PCS score; depression, stress and worsening patient mood contributed to a worse MCS score., Conclusion: We report the negative impacts of the COVID-19 pandemic on health-related QOL and its determinants in PD patients and their caregivers.

Background: A recent nurse-led proactive care management intervention, Care Coordination for Health Promotion and Activities in Parkinson Disease (CHAPS), improved care quality when compared to usual care in a randomized controlled trial. Therefore, stakeholder (patient participants, nurse care managers, and Parkinson disease (PD) specialists) perceptions of key intervention components merit evaluation to inform decisions about dissemination., Methods: This multi-site study occurred in five southwest United States Veterans Health Administration medical centers. Stakeholders were surveyed on their perceptions of CHAPS including the CHAPS Assessment, CHAPS nurse care managers, the Siebens Domain Management Model™ (a practical clinical model), and the Siebens Health Care Notebook (Notebook) (self-care tool). Participants' electronic medical records were abstracted for perceptions of the Notebook. Statistical analysis software was used to provide summary statistics; open card sorting methodology was used to identify themes and attributes in qualitative data including usability of some components., Results: Participants, overall, highly rated their medication self-management, acknowledged some challenges with the CHAPS self-care tools, reported knowledge of PD specialist follow-up and PD red flags, and rated CHAPS nurse care managers as helpful. Nurse care manager responses indicated the CHAPS Assessment and Program highly facilitated care of their patients. Most all PD specialists would refer other patients to CHAPS. Nurse care manager and PD specialist responses indicated improved participant management of their PD. Three themes emerged in participant perceptions of the Notebook: Notebook Assets (e.g., benefits and features-liked); Deferring Notebook Review (e.g., no time to review); and Reasons for Not Using (e.g., participant preference). Shared attributes regarding the Siebens Domain Management Model and Notebook usability, reported by nurse care managers, were user-friendly, person/patient-centered, and organized. Some challenges to their use were also reported., Conclusions: Overall, stakeholder perceptions of the proactive nurse-led CHAPS intervention indicated its value in the care of individuals with PD. Responses about the CHAPS Assessment, Siebens Domain Management Model, and Notebook self-care tool signified their usefulness. Stakeholders' constructive suggestions indicated their engagement in CHAPS. These findings support CHAPS dissemination and contribute to research in care management., Trial Registration: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

Treatment with deep brain stimulation for Parkinson's disease, leads to a rapid improvement in mobility, which may challenge patients and spouses when adjusting to everyday life. An intervention, developed to support the adjustment to everyday life with DBS, demonstrated that individualized meetings with a specialized nurse was experienced as important and fruitful by both patient and spouses.  Purpose: The aim was to gain a deeper understanding of how the meetings contributed to the adjustment process.  Method: 38 audio-recorded meetings and six written summaries from eight couples participating in the intervention, were analyzed in a hermeneutic process.  Results:  The analysis revealed four themes: A relational triad of co-creating personal knowing. Sharing and listening in an atmosphere of trust and openness. Unveiling the couple's everyday life, coping strategies and expectations. Supporting adjustment through knowing their personal story.  Conclusion: The triadic dynamics in the meetings were quite particular. The main focus was the patients' and spouses' stories, individually and as a couple. The DBS nurse pursues solutions based on professional and specialized knowledge of Parkinson's disease and the couple's everyday life. Thus, the intervention meetings offered tailored, individualized and specialized care in supporting adjustment to DBS for PD both individually and as couples.

Introduction: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population., Methods: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale., Results: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms., Conclusion: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background: Caregiver burden (CB) in Parkinson's disease (PD) does not improve in the short term after bilateral subthalamic nucleus (STN) deep brain stimulation (DBS), despite motor improvement. This may be due to increased caregiver demands after surgery or the possibility that DBS unresponsive non-motor factors, such as executive dysfunction, contribute to CB., Objective: To evaluate the trajectory of CB in year 2 following bilateral STN DBS surgery for PD, and to test whether post-operative CB changes correlate with changes in executive function in a subgroup with available neuropsychological testing., Methods: This retrospective analysis included 35 patients with PD whose caregivers completed the Caregiver Burden Inventory (CBI) at baseline and between 9 and 24 months after bilateral STN DBS. 14 of these patients had neuropsychological testing both at baseline and within 6 months of their follow up CBI assessment., Results: CBI scores showed worsened CB from baseline to follow-up (16.4-21.5, p = 0.006). There was no correlation between change in executive function and change in CBI in the smaller subsample., Conclusion: CB worsens in the 2 years after bilateral STN DBS despite improvement in motor symptoms and is not associated with change in executive dysfunction in the setting of advancing PD. These findings have implications on pre-operative counselling for patients and caregivers considering DBS for PD., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background: A recent nurse-led, telephone-administered 18-month intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), was tested in a randomized controlled trial and improved care quality. Therefore, intervention details on nurse care manager activity (types and frequencies) and participant actions are needed to support potential dissemination. Activities include nurse care manager use of a holistic organizing framework, identification of Parkinson's disease (PD)-related problems/topics, communication with PD specialists and care coordination, participant coaching, and participant self-care actions including use of a notebook self-care tool., Methods: This article reports descriptive data on the CHAPS intervention. The study setting was five sites in the Veterans Affairs Healthcare System. Sociodemographic data were gathered from surveys of study participants (community-dwelling veterans with PD). Nurse care manager intervention activities were abstracted from electronic medical records and logbooks. Statistical analysis software was used to provide summary statistics; closed card sorting was used to group some data., Results: Intervention participants (n = 140) were primarily men, mean age 69.4 years (standard deviation 10.3) and community-dwelling. All received the CHAPS Initial Assessment, which had algorithms designed to identify 31 unique CHAPS standard problems/topics. These were frequently documented (n = 4938), and 98.6% were grouped by assigned domain from the Organizing Framework (Siebens Domain Management Model™). Nurse care managers performed 27 unique activity types to address identified problems, collaborating with participants and PD specialists. The two most frequent unique activities were counseling/emotional support (n = 387) and medication management (n = 349). Both were among 2749 total performed activities in the category Implementing Interventions (coaching). Participants reported unique self-care action types (n = 23) including use of a new notebook self-care tool., Conclusions: CHAPS nurse care managers implemented multiple activities including participant coaching and care coordination per the CHAPS protocol. Participants reported various self-care actions including use of a personalized notebook. These findings indicate good quality and extent of implementation, contribute to ensuring reproducibility, and support CHAPS dissemination as a real-world approach to improve care quality., Trial Registration: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

A palliative approach to care is person-centered and aims to minimize overall disease burden among patients with serious illnesses. There is rising interest in the role of palliative care to improve quality of life among patients with Parkinson's disease (PD). While there is a clear indication for palliative care involvement in those with advanced disease, there is also increasing evidence for the role palliative care may play earlier in the course of PD. However, optimal methods for timing and implementation of these services remain unclear. Here, we aim to explore the palliative needs of individuals with PD from the time of diagnosis over the entire course of the illness. We discuss methods for delivering palliative care services including consultative specialty palliative care, neurologist or primary care-delivered palliative care (primary palliative care), and the emerging specialty of neuropalliative care. We also explore novel care delivery methods and their role in improving patient access to palliative services. We argue that primary palliative care is optimally positioned for the delivery of palliative care for the majority of patients with PD over the course of their illness and explore how and when palliative medicine or neuropalliative specialists can supplement this care. Finally, we describe gaps in our current understanding of outpatient palliative care delivery among the PD population including the development of better methods to identify the palliative needs of patients, the validation of novel care delivery mechanisms, and the need to enhance neurologists' and other medical providers' education in the provision of palliative care services.

Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as "nothing", "somewhat", "moderately" and "extremely". A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for "Caregivers tele-support group" and "Peer-led support group" interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients., Competing Interests: Declaration of competing interest The author(s) declare no potential conflict of interest concerning the research, authorship, or publication of this article., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Current guidelines recommend that every person with Parkinson's disease (PD) should have access to Parkinson's disease nurse specialist (PDNS) care. However, there is little scientific evidence of the cost-effectiveness of PDNS care. This hampers wider implementation, creates unequal access to care, and possibly leads to avoidable disability and costs. Therefore, we aim to study the (cost-)effectiveness of specialized nursing care provided by a PDNS compared with usual care (without PDNS) for people with PD in all disease stages. To gain more insight into the deployed interventions and their effects, a preplanned subgroup analysis will be performed on the basis of disease duration (diagnosis < 5, 5-10, or > 10 years ago)., Methods: We will perform an 18-month, single-blind, randomized controlled clinical trial in eight community hospitals in the Netherlands. A total of 240 people with PD who have not been treated by a PDNS over the past 2 years will be included, independent of disease severity or duration. In each hospital, 30 patients will randomly be allocated in a 1:1 ratio to receive either care by a PDNS (who works according to a recent guideline on PDNS care) or usual care. We will use two co-primary outcomes: quality of life (measured with the Parkinson's Disease Questionnaire-39) and motor symptoms (measured with the Movement Disorders Society-sponsored revision of the Unified Parkinson's Disease Rating Scale part III). Secondary outcomes include nonmotor symptoms, health-related quality of life, experienced quality of care, self-management, medication adherence, caregiver burden, and coping skills. Data will be collected after 12 months and 18 months by a blinded researcher. A healthcare utilization and productivity loss questionnaire will be completed every 3 months., Discussion: The results of this trial will have an immediate impact on the current care of people with PD. We hypothesize that by offering more patients access to PDNS care, quality of life will increase. We also expect healthcare costs to remain equal because increases in direct medical costs (funding additional nurses) will be offset by a reduced number of consultations with the general practitioner and neurologist. If these outcomes are reached, wide implementation of PDNS care will be warranted., Trial Registration: ClinicalTrials.gov, NCT03830190. Registered February 5, 2019 (retrospectively registered).

Background: Patients hospitalized with Parkinson's disease (PD) require timely delivery of carbidopa-levodopa (C/L) medication. Ill-timed administration of C/L doses is associated with greater morbidity and longer lengths of stay., Objective: To understand the barriers to timely C/L administration, and implement strategies to improve the administration of the drug to hospitalized PD patients., Methods: Several key strategies were employed in 2015 to improve the timely delivery of C/L doses: 1. three kinds of nursing alert in the electronic medical record (EMR); 2. staff in-service education; 3. stocking immediate-release C/L into automated medication dispensing machines on key hospital units; 4. reports to nurse unit managers on timeliness of C/L administration; and 5. reconciliation of inpatient and outpatient levodopa orders by the hospital pharmacist upon admission. The primary outcome was the percent of C/L doses administered within 60, 30, and 15 minutes of scheduled time., Results: Our urban hospital, affiliated with a Parkinson's Foundation Center of Excellence, had 5,939 C/L administrations in 2018. There was sustained improvement in timely delivery of doses, from 89.3% in 2012 to 96.5% in 2018 (within 60 minutes of the scheduled time), 65.5% to 86.4% (30 minutes), and 42.3% to 71.1% (15 minutes) (all p < 0.001)., Conclusions: With multifaceted but relatively simple measures, we were able to "change the culture" so that hospitalized patients with Parkinson's disease receive levodopa on time.

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life., Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD., Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed., Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided., Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.

Background/objective: Given the growing population of individuals with Parkinson's disease (PD) worldwide and the growing need for family members to take on a caregiving role, it is critical that cross-cultural differences be examined in order to better meet the needs of PD caregivers. The purpose of this study was to examine the connections between the unmet needs and mental health of PD caregivers differentially in Mexico and the United States., Methods: In Parkinson's clinics at public, academic medical centers, PD caregivers from Mexico (n = 148) and the United States (n = 105) completed measures of unmet family needs and mental health., Results: Caregivers in the United States had higher unmet needs for emotional support and for a community support network than caregivers in Mexico, although caregivers at the two sites had comparable levels of anxiety and depression. Unmet family needs explained 29.5% of the variance in caregiver anxiety in the United States (p < 0.001) but only 5.7% in Mexico (p = 0.209). Unmet family needs explained 30.4% of the variance in caregiver depression in the United States (p < 0.001) and 14.0% in Mexico (p = 0.001). In the United States, unmet needs for emotional support and for instrumental support uniquely predicted caregiver anxiety and depression, and in Mexico only the unmet need for instrumental support was a unique predictor., Conclusions: PD caregivers in the United States are at increased risk for poor emotional and community support, and these unmet needs channel directly into caregiver anxiety and depression. In Mexico, where caregivers have stronger emotional and community support, caregivers' unmet need for instrumental support generates anxiety and depression. Important targets for PD caregiver interventions may differ between Mexico and the United States.

Aims: To identify the type and extent of unmet needs in people with Parkinson's disease and to examine the impact of health locus of control and family support on these needs., Design: A cross-sectional study., Methods: This study was conducted from October 2015 - February 2016 in Korea. Data were collected through questionnaires focusing on unmet needs, health locus of control, family support and clinical features., Results: Therapeutic needs represented the highest percentage of unmet needs in people with Parkinson's disease (85.05%), followed by social/spiritual/emotional needs (82.72%). Physical needs were the lowest reported score (75.01%). Unmet needs were more frequent in those with more severe non-motor symptoms. Also, higher family support, internal locus of control and doctor locus of control were correlated with more unmet needs., Conclusion: Understanding factors that determine the type and degree of unmet needs in people with PD is important to provide appropriate nursing care. The findings of this study can be used for providing nursing interventions reflecting unmet needs and reducing their unmet needs to improve the overall well-being of people with PD., Impact: This study addressed unmet needs unmet needs specific to Parkinson's disease with respect to their nursing needs. Therapeutic needs were the highest unmet needs in people with PD, followed by social/spiritual/emotional needs, need for certainty and physical needs. The findings may be useful for nurses to identify the unmet needs of people with PD which need to be addressed. By reflecting on unmet needs, nurses can give personally tailored nursing care., (© 2019 John Wiley & Sons Ltd.)

Parkinson disease (PD) is a progressive, incurable disease caused by dopamine deficiency. This article provides an overview of this neurodegenerative disorder and offers information for optimal outcomes.

Aims and Objectives: To identify the personal- and disease-related factors that are associated with living with Parkinson's disease., Background: Living with Parkinson's disease affects the physical, psychological, social and spiritual areas of the person. Health professionals need to know which factors influence the daily living with Parkinson's disease, in order to facilitate a positive living., Design: A multicentre cross-sectional study., Methods: A total of 324 patients with Parkinson's disease diagnoses were included in the study through a consecutive case sampling. Data were collected from January-June 2015, in specialised units of movement disorders of public and private and community centres, from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to evaluate personal-related factors (age, gender, psychosocial function, satisfaction with life, social support, home economical situation) and Parkinson's disease-related factors (duration of disease, motor symptoms and non-motor symptoms). The STROBE checklist was used to ensure quality reporting during the study (see File S1). Multiple linear regression analysis was carried out., Results: Results indicated that social support, followed by satisfaction with life and home economical situation are the only three factors that significantly influence in living with Parkinson's disease. The rest of the factors analysed did not present significant influence in the daily living with this neurodegenerative disease., Conclusion: This study highlights the necessity to put more emphasis on the person and his/her daily living with the condition and less on symptoms and treatment. Health professionals need to develop person-centred interventions that also deal with other elements of the experience of living with a long-term condition like Parkinson's disease., Relevance to Clinical Practice: Interventions to foster positive living with Parkinson's disease in clinical practice should integrate strategies to tackle and prevent loneliness and interagency elements to increase community resources and systems of support., (© 2019 John Wiley & Sons Ltd.)

The stress process model of caregiving posits that caregivers' internal psychosocial resources may serve as buffers between the stress associated with caregiving and well-being. Empirical support for the stress process model exists for several caregiving contexts, but little research has investigated the Parkinson's disease caregiving experience in Mexico. Using a cross-sectional, correlational design, the objective of this study was to examine whether resilience moderates the relation between perceived stress and health-related quality of life (HRQOL) among Parkinson's disease caregivers in Mexico. Data were collected from April 2015 to February 2016 during outpatient neurology appointments in Mexico City, Mexico. Participants included informal caregivers (N = 95) for a family member with Parkinson's disease. Participants completed a battery of questionnaires assessing their level of perceived stress, resilience, and HRQOL. Regression analyses indicated that resilience moderated the inverse relation between perceived stress and mental HRQOL. However, contrary to hypotheses, resilience did not moderate the relation between stress and physical HRQOL. Findings shed light on resilience as a potential protective factor for mental HRQOL among Parkinson's disease caregivers in Mexico and indicate that resilience may be beneficial to target in mental health promotion interventions., (© 2019 John Wiley & Sons Ltd.)

Sexuality and intimacy are poorly researched in both people living with Parkinson's and in older people. Triggers for discussion usually centre on sexual dysfunction and hypersexuality in relation to Parkinson's. However, there are many more factors that impact on physical and emotional connectedness. Despite highlighting this unmet need there are limited tools or comprehensive assessments available to help improve quality of life. Further research is required within this field, with emphasis on health professionals' education and on highlighting to patients that they have permission for this topic to be discussed and actioned.

Background: the social impact of Parkinson's is difficult to capture in quantitative research given the condition's variable presentation, so qualitative research is needed to support a person-centred approach., Aims: to describe how people with Parkinson's experience living with their condition over time., Methods: 27 audio-recorded verbatim-transcribed interviews were analysed through the grounded theory method., Findings: past, present and future were the core categories that emerged. Past is the dimension of regretted memories of past life overturned by the communication of diagnosis. Present is the time dimension in which patients concretely experience the hindrances associated with the condition (loss of autonomy, submissive acceptance and social embarrassment), and the resources (search for autonomy, serene or in-progress acceptance, and social support). Future is characterised by both positive visions of tomorrow and negative ones (worry, resignation, denial)., Conclusion: these results, highlighting what living with Parkinson's means over time, may contribute to a better tailoring of nursing practice to the person's needs and rhythm, in a perspective of continuous adaptation.

Background: Redesigning clinical processes is an iterative process that seeks to reduce care variance and improve quality, safety and satisfaction for patients. The aim of this project was to optimise multidisciplinary collaboration, management and integration of clinical processes for people with Parkinson's Disease (PD) in one Emergency Department (ED)., Methods: The retrospective evaluation study design explored the outcomes of a clinical process redesign project. The project included: a pre-post medical record audit, a nurse survey and patient and carer telephone interviews., Results: The pre-post ED medical record audit revealed in favour of the post group a median reduction of 175 minutes (IQR 0:40 - 19:40) in length of stay, a 21% improvement in timely PD medication administration and 13% improvement in correctly prescribed PD medications. Patients and carers (n=47) were satisfied with their ED experience, clinicians' knowledge and management and healthcare decision engagement. Nurses (n=30) reported improved knowledge, confidence and management in caring for PD patients., Conclusion: This project led to enhanced multidisciplinary engagement and positive patient, clinician and service outcomes. Redesign principles can provide a pragmatic approach to improve the integration of care, change clinician behaviour, and reduce adverse outcomes within any clinical setting., (Copyright © 2019 College of Emergency Nursing Australasia. Published by Elsevier Ltd. All rights reserved.)

Objective: This study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of "off" symptoms., Methods: During qualitative interviews, CPs of PwP sampled by convenience through the Michael J Fox Foundation online clinical trial matching service were asked to describe their familiarity with "off" symptoms, how "off" symptoms were discussed with clinicians, and the impact of "off" symptoms on them. Data were analysed using constant comparative technique by all members of the research team., Results: A total of 20 CPs were interviewed. Compared with PwP, they were more likely to describe "off" symptoms to clinicians. CPs identified important aspects of patient-centred care for PD: establishing a therapeutic relationship, soliciting and actively listening to information about symptoms, and providing self-management support to both PwP and CPs. CPs said that clinicians did not always engage CPs, ask about "off" symptoms or provide self-management guidance, limiting their ability to function as caregivers., Conclusion: By not engaging and educating CPs, "off" symptoms may not be identified or addressed, leading to suboptimal medical management and quality of life for PwP. These findings must be confirmed on a broader scale through ongoing research but suggest the potential need for interventions targeted at clinicians and at CPs to promote patient-centred care for PwP., (© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Neurodegenerative diseases are more common in older individuals and are progressively debilitating. Due to the aging of the American population, the burden of neurodegenerative diseases on the health care infrastructure will likely significantly increase in the near future. Genetic science has advanced our understanding of the pathology driving these diseases thereby informing new, individualized care paradigms. Although translation into clinical practice is slow, there are a few examples of instances where precision medicine is making a difference in the care of patients with neurodegenerative diseases that may be driven by genetic background. This article provides a brief overview of the current knowledge of genetic influences on two common neurodegenerative diseases, Alzheimer Disease and Parkinson Disease, as well as ways this knowledge is being tested for a precision medicine approach to care.

Catherine is an advanced nurse practitioner and today she is reviewing patients with chronic diseases. She is trained to clinically assess patients and to refer to medical and other colleagues as part of a multi-disciplinary team. Her first patient is Mr Finch who is 66 years old. He suffers with Parkinson's disease., (Copyright © 2019 Elsevier Masson SAS. All rights reserved.)

People living with Parkinson's disease (PWPD) in rural areas have limited access to local condition-specific care. This paper examines the healthcare preferences of PWPD living in rural areas and how a community-driven initiative to employ a movement disorder nurse (MDN) functioned to address barriers to health services access. A qualitative design facilitated an understanding of how interactions with the health system shaped PWPD and their carer's experiences of living in a regional community. A total of 42 semi-structured interviews were conducted 6-9 months apart; 19 interviews with PWPD and 23 dyadic interviews. The findings support the contention that specialist care can be effectively delivered through allied health professionals in some settings. In particular, having access to a specialist MDN can cushion the effects of living with Parkinson's disease in regional and rural areas where continuity of care and access to timely support is often difficult for people to find. The quality of social support provided by the MDN may increase people's ability to cope in the face of an unpredictable disease course. This is consistent with prior research, which identified that a specialist nurse or allied health services for people living with chronic conditions is enhances quality of life.

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer's Disease and other dementia (AD), Parkinson's Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations.

Background: Despite a growing research literature on caregiver burden in progressive diseases (e.g., dementia), the experiences and needs of family members of patients with Parkinson's disease (PD), especially of those who are not caring primarily, are underinvestigated. Furthermore, there is only limited evidence for interventions for PD relatives., Objective: The aim of this cross-sectional study was to assess the intervention needs of PD family members., Methods: 133 relatives of PD patients were asked about the essential topics and the appropriate format of a psychoeducational group intervention by means of a standardized questionnaire., Results: The sample consisted of 67 caregivers (CG) and 66 non-caregivers (nCG). CGs and nCGs were mainly female (75% vs. 64%) and patients' spouses (97% vs. 59%). CGs were about 15 years older than nCGs. Both groups were considerably burdened by patients' disease, and 84% of the CGs and 90% of the nCGs were convinced about the subjective benefit of a group intervention. The majority of the CGs rated stress management, coping with emotional distress, receiving social support, and different information modules as essential topics. In comparison, more than half of the nCGs voted for sharing experiences with other relatives, as well as for different information modules. Most individuals preferred two-hour sessions in the late afternoon (once or twice a week) with a maximum of ten participants., Conclusions: This study contributes to an increased understanding of PD families' needs and might inform future studies concerning the development of needs-based and low-threshold support programs.

To close a gap between inpatient and outpatient care, the Hamburg Parkinson day-clinic (HPDC) has been developed as a new and comprehensive, individual, interdisciplinary type of treatment for patients with complex Parkinsonian syndromes (PS). First, we describe the HPDC concept, in which a multi-professional medical team of PD specialists provide a time- and personnel-wise intensive care and focuses on the patients' individual deficits and resources. Second, we present short-term outcome results of the first 184 PS patients enrolled during 16 months including objective clinical motor and non-motor scores taken before and after participation in the HPDC, as well as the patients' subjective evaluation of the HPDC. Out of the 184 patients with PS (aged 39-88 years with Hoehn and Yahr scores between 1.0 and 4.5), 169 were diagnosed to have Parkinson disease (PD). HPDC treatment led to improvement of all applied motor (UPDRS III, AIMS) and non-motor (BDI-II, MoCA, PDNMS, PDSS-2, King's PD Pain Scale, QUIP, PDQ-39) scores (p < 0.05) indicating benefits for akinesia, tremor, dyskinesia, cognition, sleep, pain, impulse control disorders and quality of life. Patients evaluated HPDC care positively with values from 1.39 to 2.79 ("very good" to "satisfying") with an overall grade of 1.69 ("good") on a 6-point Likert scale (1-6: best to worst). Patients with advanced PS benefit from the HPDC concept which is considered to close a gap between inpatient and outpatient care.

Neurodegenerative disorders are progressive, debilitating impairments of neurologic function. Dementia affects cognition and function. Persons with cognitive deficits should undergo a full workup and may be treated with cholinesterase inhibitors and/or memantine. Behavioral and psychological symptoms of dementia may be assessed and treated individually. Parkinson disease is a disorder of movement. Levodopa is the standard treatment of dopamine-related movement symptoms. Associated symptoms should be assessed and treated. Other neurodegenerative syndromes are less common but highly debilitating. Currently, there are no curative or disease-modifying therapies for neurodegenerative disorders. Novel therapies or research are in the pipeline., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Status and development of the role as Parkinson Nurse in Germany - an online survey Abstract., Background: In Germany there is a course for Parkinson Nurses (PN) since 2006. Content, structure and organization of their tasks have not yet been systematically described for Germany., Aim: How is the typical working day of PN organised in Germany? Which tasks do they have? Which conditions are promoting or inhibiting for their work?, Methods: Among the graduates of the course, an online survey was conducted from September to November 2016. 39 questionnaires were analysed descriptively (response rate 34 %)., Results: 52 % of PN work in specialist hospitals and 26 % work in hospitals of maximum medical care. Only 29 % work according to a concept and only 23 % have a job description. 21 % of respondents no longer work as PN. Counselling and education, information on medication management, educational advertising on Parkinson' disease as well as training of other professionals are at the centre of their work. The activities usually focus the work in the institution; a trans-sectoral support for people with Parkinson's disease is rare., Conclusions: In the future, concepts and job descriptions should be stored in the institutions, which are oriented towards a cross-institutional orientation framework. On the basis of a common understanding of roles it is possible to facilitate networking of the PN as well as the co-operation with other specialists. The curriculum at an academic level leads to the necessary competencies.

Parkinson's disease (PD) is a slowly progressive multi-system neurodegenerative disorder, with no available disease-modifying treatment. The disease is associated with motor and non-motor symptoms leading to impaired quality of life, disability and signi cant caregiver distress. Patients with PD bene t from palliative care which provides a holistic approach to meet their multi-faceted needs, including symptom control, communication needs and caregiver support. This article would review on recent articles addressing palliative care for PD.

The inability to achieve adequate nutrition and weight loss are serious problems for patients with advanced Parkinson's disease (PD). To ensure the optimal intake of nutrition and fluids and to administer levodopa-carbidopa intestinal gel (LCIG) (which patients need to increase or maintain their mobility as long as possible), different artificial feeding tubes can be used. Although percutaneous endoscopic gastrostomy (PEG) tubes are frequently used in medical practice, there is little research that addresses key questions, including if and when to administer artificial fluids, nutrition and/or LCIG via tubes. Weight gain through tube feeding is only possible for some patients; nurses should keep in mind that tube insertion and feeding may lead to frequent adverse events. Administering LCIG via tubes is usually advisable as it seems to enhance patients' mobility and therefore has positive outcomes in terms of the quality of life of patients and their families ( Lim et al, 2015 ). The authors aimed to examine the use and consequences of providing nutrition and LCIG via gastrostomy tubes in PD patients with advanced disease.

Background: Within contemporary medical practice, Parkinson's disease (PD) is treated using a biomedical, neurological approach, which although bringing numerous benefits can struggle to engage with how people with PD experience the disease. A bio-psycho-social approach has not yet been established in PD; however, bio-psycho-social approaches adopted within dementia care practice could bring significant benefit to PD care., Methods: This paper summarises existing bio-psycho-social models of dementia care and explores how these models could also usefully be applied to care for PD. Specifically, this paper adapts the bio-psycho-social model for dementia developed by Spector and Orrell (), to suggest a bio-psycho-social model, which could be used to inform routine care in PD., Results: Drawing on the biopsychosocial model of Dementia put forward by Spector and Orrell (), this paper explores the application of a bio-psycho-social model of PD. This model conceptualises PD as a trajectory, in which several interrelated fixed and tractable factors influence both PD's symptomology and the various biological and psychosocial challenges individuals will face as their disease progresses. Using an individual case study, this paper then illustrates how such a model can assist clinicians in identifying suitable interventions for people living with PD., Conclusion: This model concludes by discussing how a bio-psycho-social model could be used as a tool in PD's routine care. The model also encourages the development of a theoretical and practical framework for the future development of the role of the PD specialist nurse within routine practice., Implications for Practice: A biopsychosocial approach to Parkinson's Disease provides an opportunity to move towards a holistic model of care practice which addresses a wider range of factors affecting people living with PD. The paper puts forward a framework through which PD care practice can move towards a biopsychosocial perspective. PD specialist nurses are particularly well placed to adopt such a model within routine clinical practice, and should therefore be encouraged within PD services., (© 2017 John Wiley & Sons Ltd.)

Aims: The aim of this study were: (1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; (2) To suggest the components of an intervention focused on enhancing their coping with the disease., Background: Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills., Design: A sequential explanatory mixed methods study was carried out. Findings from the qualitative phase are presented., Methods: Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers., Findings: The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed., Conclusion: Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long-term conditions., (© 2017 John Wiley & Sons Ltd.)