[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"detail-sidebar-cat-0-en-105":3,"doc-detail-447612-en":59,"doc-seo-447612-105":81},{"code":4,"msg":5,"data":6},0,"success",[7,13,18,23,28,33,38,43,48,51,55],{"id":8,"doc_module":4,"doc_module_name":9,"category_name":10,"show_sort_weight":11,"slug":12},1,"Document","Story & Novel",90,"story-novel",{"id":14,"doc_module":4,"doc_module_name":9,"category_name":15,"show_sort_weight":16,"slug":17},2,"Literature",80,"literature",{"id":19,"doc_module":4,"doc_module_name":9,"category_name":20,"show_sort_weight":21,"slug":22},4,"Exam",70,"exam",{"id":24,"doc_module":4,"doc_module_name":9,"category_name":25,"show_sort_weight":26,"slug":27},5,"Comic",60,"comic",{"id":29,"doc_module":4,"doc_module_name":9,"category_name":30,"show_sort_weight":31,"slug":32},6,"Technology",50,"technology",{"id":34,"doc_module":4,"doc_module_name":9,"category_name":35,"show_sort_weight":36,"slug":37},7,"Healthcare",40,"healthcare",{"id":39,"doc_module":4,"doc_module_name":9,"category_name":40,"show_sort_weight":41,"slug":42},8,"Research & Report",30,"research-report",{"id":44,"doc_module":4,"doc_module_name":9,"category_name":45,"show_sort_weight":46,"slug":47},9,"Religion & Spirituality",20,"religion-spirituality",{"id":46,"doc_module":4,"doc_module_name":9,"category_name":49,"show_sort_weight":46,"slug":50},"World Cup","world-cup",{"id":52,"doc_module":4,"doc_module_name":9,"category_name":53,"show_sort_weight":52,"slug":54},10,"Lifestyle","lifestyle",{"id":56,"doc_module":4,"doc_module_name":9,"category_name":57,"show_sort_weight":24,"slug":58},19,"General","general",{"code":4,"msg":5,"data":60},{"doc_id":61,"user_id":62,"nickname":63,"user_avatar":64,"doc_module":4,"category_id":34,"category_name":35,"doc_title":65,"doc_description":66,"doc_content":67,"file_id":68,"file_url":69,"file_type":70,"file_size":71,"view_count":72,"is_deleted":4,"is_public":8,"is_downloadable":8,"audit_status":8,"page_count":34,"language":73,"language_code":74,"site_id":75,"html_lang":74,"table_of_contents":76,"faqs":77,"seo_title":78,"seo_description":66,"update_tm":79,"read_time":80,"preview_page_count":4},447612,3985747870733,"acoobca","https://ap-avatar.wpscdn.com/davatar_a8503ba1806abce46bf441b54a3ca4cd","Caregiver Burden in Prion Disease - Research Article","Caregiver burden significantly affects outcomes for both patients and caregivers in dementia, yet prospective evidence in prion disease is limited. This study followed 30 patients with prion disease and their caregivers through the Teleneurology Assessment Program for Creutzfeldt-Jakob Disease, using NPI-Q, MRC Prion Disease Rating Scale, and National Family Caregiver Support Program measures. Distress rose during enrollment, peaked about halfway, then declined. Higher Zarit burden correlated with younger age at disease onset, while disease type, duration, caregiver demographics, relationship, clinical ratings, and support group attendance were not predictive. Findings confirm substantial caregiver distress across the disease course.","Dementia and Geriatric Cognitive Disorders Extra  \nResearch Article  \nDement Geriatr Cogn Disord Extra 2026;16:4–10 DOI: 10. 1159/000549584  \nReceived: May 19, 2025  \nAccepted: November 9, 2025  \nPublished online: November 24, 2025  \nCaregiver Burden in Prion Disease  \nAlexsandra Kovacevicha, b John Thomas Martinb, c Kathleen Glisicd Paula Ogrockia, b Brian S. Appleby a, b, d  \naDepartment of Neurology, University Hospital’s Neurological Institute, Cleveland, OH, USA; bSchool of Medicine, Case Western Reserve University, Cleveland, OH, USA; cDepartment of Neuropsychology, University Hospital’s Neurological Institute, Cleveland, OH, USA; dNational Prion Disease Pathology Surveillance Center, Case Western Reserve University, Cleveland, OH, USA  \nKeywords  \nPrion disease · Creutzfeldt-Jakob · Caregiver burden · Caregivers  \nAbstract  \nIntroduction: Caregiver burden significantly impacts patient and caregiver outcomes and is an important treatment consideration in dementia. Previous research has demonstrated that like behavioral variant frontotemporal dementia, prion disease has higher levels of caregiver burden than other forms of dementia; however, limited prospective research has investigated this specifically. Here, we aimed to describe caregiver well-being and caregiver burden in prion disease and determine whether demographic features, support group attendance, or features of the disease process predicted higher caregiver burden. Methods: Thirty patients with prion disease and their caregivers were assessed longitudinally through the Teleneurology Assessment Program for Creutzfeldt-Jakob Disease. Caregivers were administered the Neuropsychiatric Inventory Questionnaire (NPI-Q), MRC Prion Disease Rating Scale, Outcome Evaluation of the National Family Caregiver Support Program, and other assessment instruments. We performed descriptive and inferential statistics to examine the progression of caregiver burden and to identify features that impacted caregiver burden severity. Results: Thirty caregiver-patient dyads were followed longitudinally. Prion  \ndisease duration averaged 7.88 months. Mean initial NPI-Q distress score was 15. Qualitatively, distress increased from the time of study enrollment until peaking on average halfway through study participation and then declined. Higher burden (4-item Zarit Burden Interview) was associated with younger age at disease onset. Burden was not predicted by disease type, duration, caregiver demographics, relationship to the patient, MRC Prion Rating Scale scores, NPI-Q, or support group attendance. Conclusion: These findings confirm significant caregiver distress in prion disease and help better describe the course of caregiver burden throughout the disease. Statistical analyses were limited by small sample size and phenotypic heterogeneity, and future research would benefit from larger sample sizes.  \n© 2025 The Author(s) .  \nPublished by S. Karger AG, Basel  \nIntroduction  \nCaregiver burden is an important consideration in the management of dementia as it has been associated with significant patient and caregiver outcomes including institutionalization and declining caregiver well-being [ 1, 2] . Prior research indicates that caregiver burden varies across dementia subtypes, with behavioral variant frontotemporal dementia and prion disease exhibiting higher levels of burden compared to other forms of  \n[karger@karger.com](karger@karger.com)[ ](karger@karger.com)[www.karger.com/dee](www.karger.com/dee)  \n© 2025 The Author(s) .  \nPublished by S. Karger AG, Basel  \nThis article is licensed under the Creative Commons AttributionNonCommercial 4.0 International License (CC BY-NC) ([https://](https://)[ ](https://)[karger.com/Services/OpenAccessLicense](karger.com/Services/OpenAccessLicense)). Usage and distribution for commercial purposes requires written permission.  \nCorrespondence to:  \nAlexsandra Kovacevich, kovacevichali [gmail.com](gmail.com)  \ndementia; however, limited research has i","cbCaivqH5K3ZV2PP","https://ap.wps.com/l/cbCaivqH5K3ZV2PP","pdf",1562525,11,"English","en",105,"# Introduction\n## Study Rationale and Background\n# Methods\n## Participants and Assessments\n# Results\n## Longitudinal Caregiver Distress and Predictors\n# Conclusion\n## Implications and Limitations","[{\"question\":\"What was the main goal of the study on prion disease caregiving?\",\"answer\":\"To describe caregiver well-being and caregiver burden in prion disease and test whether demographics, support group attendance, or disease-process features predicted higher caregiver burden.\"},{\"question\":\"Which assessments were used to evaluate caregiver burden and distress?\",\"answer\":\"Caregivers completed the Neuropsychiatric Inventory Questionnaire (NPI-Q) and the Zarit Burden Interview, alongside measures including the MRC Prion Disease Rating Scale and instruments tied to the National Family Caregiver Support Program.\"},{\"question\":\"What factors were associated with higher caregiver burden?\",\"answer\":\"Higher 4-item Zarit Burden Interview scores were associated with younger age at disease onset. Burden was not predicted by disease type, disease duration, caregiver demographics, relationship to the patient, clinical scale scores, NPI-Q measures, or support group attendance.\"}]","Caregiver Burden in Prion Disease - Research Article | PDF",1790721857,18,{"code":4,"msg":82,"data":83},"ok",{"site_id":75,"language":74,"slug":84,"title":65,"keywords":85,"description":66,"schema_data":86,"social_meta":140,"head_meta":142,"extra_data":144,"updated_unix":145},"caregiver-burden-in-prion-disease-research-article","",{"@graph":87,"@context":139},[88,102,122],{"@type":89,"itemListElement":90},"BreadcrumbList",[91,95,97,100],{"item":92,"name":93,"@type":94,"position":8},"https://docshare.wps.com","Home","ListItem",{"item":96,"name":9,"@type":94,"position":14},"https://docshare.wps.com/document/",{"item":98,"name":35,"@type":94,"position":99},"https://docshare.wps.com/document/healthcare/",3,{"item":101,"name":65,"@type":94,"position":19},"https://docshare.wps.com/document/caregiver-burden-in-prion-disease-research-article/447612/",{"url":101,"name":65,"@type":103,"image":104,"author":109,"headline":65,"publisher":111,"fileFormat":114,"inLanguage":74,"description":66,"dateModified":115,"datePublished":116,"encodingFormat":114,"isAccessibleForFree":117,"interactionStatistic":118},"DigitalDocument",{"url":105,"@type":106,"width":107,"height":108},"https://docshare.wps.com/thumbnails/caregiver-burden-in-prion-disease-research-article/447612.png","ImageObject",300,407,{"name":63,"@type":110},"Person",{"url":92,"name":112,"@type":113},"DocShare","Organization","application/pdf","2026-10-30","2026-09-29",true,{"@type":119,"interactionType":120,"userInteractionCount":72},"InteractionCounter",{"@type":121},"ViewAction",{"@type":123,"mainEntity":124},"FAQPage",[125,131,135],{"name":126,"@type":127,"acceptedAnswer":128},"What was the main goal of the study on prion disease caregiving?","Question",{"text":129,"@type":130},"To describe caregiver well-being and caregiver burden in prion disease and test whether demographics, support group attendance, or disease-process features predicted higher caregiver burden.","Answer",{"name":132,"@type":127,"acceptedAnswer":133},"Which assessments were used to evaluate caregiver burden and distress?",{"text":134,"@type":130},"Caregivers completed the Neuropsychiatric Inventory Questionnaire (NPI-Q) and the Zarit Burden Interview, alongside measures including the MRC Prion Disease Rating Scale and instruments tied to the National Family Caregiver Support Program.",{"name":136,"@type":127,"acceptedAnswer":137},"What factors were associated with higher caregiver burden?",{"text":138,"@type":130},"Higher 4-item Zarit Burden Interview scores were associated with younger age at disease onset. Burden was not predicted by disease type, disease duration, caregiver demographics, relationship to the patient, clinical scale scores, NPI-Q measures, or support group attendance.","https://schema.org",{"og:url":101,"og:type":141,"og:title":65,"og:site_name":112,"og:description":66},"article",{"robots":143,"canonical":101},"index,follow",{"doc_id":61,"site_id":75},1790863326]