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Longacre ML, Roche L, Kueppers GC, Buurman B. Parkinson's Disease and Caregiving Roles, Demands, and Support Needs and Experiences: A Scoping Review. Healthcare (Basel) 2025; 13:79. [PMID: 39791686 PMCID: PMC11720262 DOI: 10.3390/healthcare13010079] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/04/2024] [Revised: 12/19/2024] [Accepted: 12/26/2024] [Indexed: 01/12/2025] Open
Abstract
Background and Objectives: A public health priority is the increasing number of persons with Parkinson's disease (PwP), and the need to provide them with support. We sought to synthesize the experiences of relatives or friends-family caregivers-who provide such support. Eligibility Criteria: This study was a scoping literature review modeled by the PRISMA guidelines. The articles for this review fit the following inclusion criteria: (1) studies including the perspective of caregivers of PwP, (2) studies conducted in the United States, and (3) studies conducted between January 2019 to January 2024. Sources of Evidence: Articles were identified by searching the PubMed, EBSCO, and Ovid databases between January 2019 and January 2024. The search terms included the following: (Parkinson's disease) AND (caregiver OR caregiving OR carer). Results: A total of 31 articles were included. Most of the included articles are descriptive (n = 26), including quantitative (n = 17), qualitative (n = 7), and mixed-methods studies (n = 2). Gender, race, and ethnicity were not consistently reported. Findings across studies demonstrated common roles of caregiving (e.g., assistance with personal care), extensive physical and mental health strains, social isolation, and work and financial strain. Benefit-finding was also evident among caregivers including a goal of securing the PwP dignity and comfort as the disease progressed. The studies of this review provide perspectives on benefits and challenges of caregiving in this context and caregiver resources. Conclusions: Future studies need to improve racial and gender-related diversity and address caregiver strain and health.
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Affiliation(s)
- Margaret L. Longacre
- Department of Public Health, College of Health Sciences, Arcadia University, 241 Easton Hall, 450 S. Easton Rd., Glenside, PA 19038, USA
| | - Lacey Roche
- Department of Public Health, College of Health Sciences, Arcadia University, 241 Easton Hall, 450 S. Easton Rd., Glenside, PA 19038, USA
| | - George C. Kueppers
- National Alliance for Caregiving, 1730 Rhode Island Avenue NW, Suite 812, Washington, DC 20036, USA
| | - Bart Buurman
- Department of Public Health, College of Health Sciences, Arcadia University, 241 Easton Hall, 450 S. Easton Rd., Glenside, PA 19038, USA
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Wu J, Jin X, Xie W, Liu L, Wang F, Zhu L, Shen Y, Qiu L. Global research trends and hotspots in Parkinson's disease psychosis: a 25-year bibliometric and visual analysis. Front Aging Neurosci 2024; 16:1480234. [PMID: 39649718 PMCID: PMC11621064 DOI: 10.3389/fnagi.2024.1480234] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/13/2024] [Accepted: 11/07/2024] [Indexed: 12/11/2024] Open
Abstract
Background Parkinson's disease psychosis (PDP) is one of the most severe and disabling non-motor symptoms in the progression of Parkinson's disease (PD), significantly impacting the prognosis of PD patients. In recent years, there has been an increase in literature on PDP. However, bibliometrics has rarely been applied to PDP research. This study provides an overview of the current state of PDP research and predicts future trends in this field. Methods The literature search was conducted using the Web of Science Core Collection, with the search terms (Parkinson* AND (psychotic* OR hallucination* OR illusion* OR delusion* OR misperception* OR psychosis OR psychoses)). VOSviewer and CiteSpace software were employed to perform bibliometric analysis and visual representation of the search results. Results A total of 603 articles were effectively included. Since 2017, there has been a significant upward trend in publications related to PDP. The United States, the United Kingdom, and Canada were the top three contributing countries in terms of publication volume, with France also having a strong influence in this field. Movement Disorders and King's College London included and published the most articles on PDP. The paper titled "Hallucinations in Parkinson's Disease: Prevalence, Phenomenology, and Risk Factors" received the highest number of citations and average citations. Cluster analysis results identified brain, prevalence, connectivity, and atypical antipsychotics as key hotspots in this field. High-frequency keywords were grouped into three themes: neurobiology, therapeutic strategies, and symptom research. Among them, pimavanserin, risk, and functional connectivity have been the most studied areas in the past 7 years and are likely to remain key topics in future research. Conclusion Research on PDP has garnered increasing attention. This study visualizes PDP research over the past 25 years to analyze global hotspots and trends. It offers researchers a valuable perspective for identifying key topics and understanding research trajectories in this expanding field.
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Affiliation(s)
- Jianhong Wu
- Affiliated Mental Health Center of Jiangnan University, Wuxi Central Rehabilitation Hospital, Wuxi, Jiangsu, China
| | - Xin Jin
- Northern Jiangsu People’s Hospital, Yangzhou, Jiangsu, China
| | - Weiming Xie
- Affiliated Mental Health Center of Jiangnan University, Wuxi Central Rehabilitation Hospital, Wuxi, Jiangsu, China
| | - Liang Liu
- Zhongnan Hospital of Wuhan University, Wuhan, Hubei, China
| | - Fei Wang
- Affiliated Mental Health Center of Jiangnan University, Wuxi Central Rehabilitation Hospital, Wuxi, Jiangsu, China
| | - Ling Zhu
- Jiangyin People's Hospital, Wuxi, Jiangsu, China
| | - Yuan Shen
- Affiliated Mental Health Center of Jiangnan University, Wuxi Central Rehabilitation Hospital, Wuxi, Jiangsu, China
| | - Linghe Qiu
- Affiliated Mental Health Center of Jiangnan University, Wuxi Central Rehabilitation Hospital, Wuxi, Jiangsu, China
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Reidy C, Doble E, Robson A, Kar P. Peer support in chronic health conditions. BMJ 2024; 386:e070443. [PMID: 38950946 DOI: 10.1136/bmj-2022-070443] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 07/03/2024]
Affiliation(s)
- Claire Reidy
- Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
- Patient author
| | | | | | - Partha Kar
- NHS England
- Portsmouth Hospitals NHS Trust, Portsmouth
- General Medical Council, London
- General Medical Council, London
- Royal College of Physicians, London
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Zhang S, Ma Y. Emerging role of psychosis in Parkinson's disease: From clinical relevance to molecular mechanisms. World J Psychiatry 2022; 12:1127-1140. [PMID: 36186499 PMCID: PMC9521528 DOI: 10.5498/wjp.v12.i9.1127] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/23/2022] [Revised: 06/12/2022] [Accepted: 08/16/2022] [Indexed: 02/05/2023] Open
Abstract
Parkinson's disease (PD) is the second most common neurodegenerative disease. Psychosis is one of the common psychiatric presentations in the natural course of PD. PD psychosis is an important non-motor symptom, which is strongly correlated with a poor prognosis. Increasing attention is being given to PD psychosis. In this opinion review, we summarized and analyzed the identification, screening, epidemiology, mechanisms, risk factors, and therapeutic approaches of PD psychosis based on the current clinical evidence. PD psychosis tends to have a negative effect on patients' quality of life and increases the burden of family caregiving. Screening and identification in the early stage of disease is crucial for establishing tailored therapeutic strategies and predicting the long-term outcome. Development of PD psychosis is believed to involve a combination of exogenous and endogenous mechanisms including imbalance of neurotransmitters, structural and network changes, genetic profiles, cognitive impairment, and antiparkinsonian medications. The therapeutic strategy for PD psychosis includes reducing or ceasing the use of dopaminergic drug, antipsychotics, cholinesterase inhibitors, and non-pharmacological interventions. Ongoing clinical trials are expected to provide new insights for tailoring therapy for PD psychosis. Future research based on novel biomarkers and genetic factors may help inform individualized therapeutic strategies.
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Affiliation(s)
- Shuo Zhang
- Department of Neurology, Shengjing Hospital of China Medical University, Shenyang 110004, Liaoning Province, China
| | - Yan Ma
- Department of Ultrasound, Shengjing Hospital of China Medical University, Shenyang 110004, Liaoning Province, China
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Leung T, Akram F, Lee J, Klostermann EC, Hess SP, Myrick E, Levin M, Ouyang B, Wilkinson J, Hall D, Chodosh J. Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study. JMIR Res Protoc 2022; 11:e34750. [PMID: 35481819 PMCID: PMC9185354 DOI: 10.2196/34750] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/06/2021] [Revised: 04/27/2022] [Accepted: 04/28/2022] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND Homebound individuals with advanced Parkinson disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. OBJECTIVE The aim of this study was to test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. METHODS This was a single-center, 16-week pilot study of caregiver peer mentoring nested within a year-long controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and postmentoring intervention at home visits 2 and 3. RESULTS Enrollment and peer-mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were White, female spouses or partners of individuals with PD; mentors had a mean of 8.7 (SD 6.4) years of caregiving experience, and 33 mentors were matched with at least 1 mentee. CONCLUSIONS This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. TRIAL REGISTRATION ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) DERR1-10.2196/34750.
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Affiliation(s)
| | | | | | | | | | - Erica Myrick
- RUSH UNIVERSITY MEDICAL CENTER, Chicago, US.,Western Michigan University Homer Stryker M.D. School of Medicine, Kalamazoo, US
| | - Melissa Levin
- RUSH UNIVERSITY MEDICAL CENTER, 1725 w Harrison St., Chicago, US.,Chicago Medical School, Rosalind Franklin University, North Chicago, US
| | - Bichun Ouyang
- RUSH UNIVERSITY MEDICAL CENTER, 1725 w Harrison St., Chicago, US
| | - Jayne Wilkinson
- RUSH UNIVERSITY MEDICAL CENTER, 1725 w Harrison St., Chicago, US.,Department of Neurology, University of Pennsylvania, Pennsylvania, US
| | - Deborah Hall
- RUSH UNIVERSITY MEDICAL CENTER, 1725 w Harrison St., Chicago, US
| | - Joshua Chodosh
- Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York University School of Medicine, 227 E. 30th St.TRB 839, New York, US.,VA New York Harbor Healthcare System, Medicine Service, New York, US
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Contribution of neuropsychiatric symptoms in Parkinson's disease to different domains of caregiver burden. J Neurol 2021; 268:2961-2972. [PMID: 33629181 PMCID: PMC8289810 DOI: 10.1007/s00415-021-10443-7] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/14/2020] [Revised: 01/31/2021] [Accepted: 02/03/2021] [Indexed: 11/22/2022]
Abstract
Introduction Caregiver burden is high among caregivers of PD patients (CPD). Neuropsychiatric symptoms are leading contributors to CPD burden, but whether different symptoms differentially impact domains of caregiver burden is not known. Our objective was to examine which neuropsychiatric symptoms and demographic factors contribute to different domains of caregiver burden in PD. Methods This was a cross-sectional online survey study. Participants were recruited from the Fox Insight (FI) study and were eligible if they identified themselves as a CPD. The primary outcome was the Caregiver Burden Inventory (CBI) total score and its 5 sub-domain scores. The Neuropsychiatric Inventory Questionnaire (NPI-Q) assessed caregiver-reported neuropsychiatric symptoms in the care recipient. Multivariable linear regression models were used to characterize the associations between NPI-Q symptom severity scores and CBI scores. Covariates were caregiver age, sex, education, and caregiving duration. Results The sample consisted of 450 CPD, mean age 65.87 (SD 10.39) years, 74% females. After adjusting for covariates, CBI total score was predicted by NPI-Q total score (β = 1.96, p < 0.001); model adjusted R2 = 39.2%. Anxiety severity had the largest effect size [standardized β (sβ) = 0.224] on the time-dependency domain, which was also associated with female sex (sβ = − 0.133) and age (sβ = 0.088). Severity of disinhibition (sβ = 0.218), agitation (sβ = 0.199), and female sex (sβ = 0.104) were associated with greater emotional burden. Conclusion Our findings indicate that demographic characteristics and specific neuropsychiatric symptoms contribute differentially to domains of caregiver burden. Tailored interventions to support CPD are needed. Supplementary Information The online version contains supplementary material available at 10.1007/s00415-021-10443-7.
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