Department of Neuromuscular Research, National Center of Neurology and Psychiatry (NCNP), National Institute of Neuroscience, 4-1-1 Ogawahigashi, Tokyo 187-8502, Japan; Medical Genome Center, NCNP, Tokyo, Kodaira, Japan. Electronic address: nishino@ncnp.go.jp.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France.
Department of Neuromuscular Research, National Institute of Neuroscience, National Center of Neurology and Psychiatry, 187-8502 Tokyo, Japan; Department of Genome Medicine Development, Medical Genome Center, National Center of Neurology and Psychiatry, 187-8551 Tokyo, Japan.
From the Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital, Department of Neurobiology, Care Science and Society, Division of Physiotherapy and Department of Medicine, Karolinska Institutet; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska Institutet, Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, Korea; Division of Rheumatology, Fiona Stanley Hospital, Institute for Immunology and Infectious Diseases, Murdoch University, Perth; The Notre Dame University Fremantle, Fremantle, Australia; Amsterdam UMC, University of Amsterdam, Department of Neurology, Amsterdam Neuroscience, Amsterdam, the Netherlands; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada.
M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; J.K. Park, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; I. de Groot, Patient Research Partner; C. Sarver, Patient Research Partner; M. Needham, MD, Division of Rheumatology, Fiona Stanley Hospital, Institute for Immunology and Infectious Diseases, Murdoch University, and The Notre Dame University; M. de Visser, MD, PhD, Amsterdam UMC, University of Amsterdam, Department of Neurology, Amsterdam Neuroscience; B. Shea, MSN, Center for Global Health, University of Ottawa; C.O. Bingham III, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska Institutet; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; H. Alexanderson, PhD, Physiotherapist, Department of Neurobiology, Care Science and Society, Division of Physiotherapy and Department of Medicine Solna, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital. M. Regardt and Dr. C. Mecoli are co-first authors.
Department of Neuromuscular Research, National Center of Neurology and Psychiatry (NCNP), National Institute of Neuroscience, 4-1-1 Ogawahigashi, Tokyo 187-8502, Japan; Medical Genome Center, NCNP, Tokyo, Kodaira, Japan; Department of Pediatrics, Showa General Hospital, Tokyo, Kodaira, Japan.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France. isabelle.marty@univ-grenoble-alpes.fr.
Neuromuscular Morphology Unit, Myology Institute, Groupe Hospitalier Universitaire La Pitié-Salpêtrière, Paris, France. matteo.garibaldi@uniroma1.it.
Unit of Neuromuscular Diseases, Neuromuscular Disease Centre, Department of Neurology Mental Health and Sensory Organs (NESMOS), Faculty of Medicine and Psychology, SAPIENZA University of Rome, Sant'Andrea Hospital, Via di Grottarossa 1035-1039, 00189, Rome, Italy. matteo.garibaldi@uniroma1.it.
Service Neurologie Médicale, Centre de Référence Maladies Neuromusculaire Paris-Est-Ile de France, CHU Raymond-Poincaré Paris Ouest, Garches, France.
U1179 UVSQ-INSERM Handicap Neuromusculaire: Physiologie, Biothérapie et Pharmacologie appliquées, UFR des sciences de la santé Simone Veil, Université Versailles-Saint-Quentin-en-Yvelines, Versailles, France.
Unit of Neuromuscular Diseases, Neuromuscular Disease Centre, Department of Neurology Mental Health and Sensory Organs (NESMOS), Faculty of Medicine and Psychology, SAPIENZA University of Rome, Sant'Andrea Hospital, Via di Grottarossa 1035-1039, 00189, Rome, Italy.
Distance caregivers (DCGs), those who live more than an hour away from the care recipient, often play a significant role in patients' care. While much is known about the experience and outcomes of loc...
Dementia is currently one of the major causes of disability and dependency among older adults worldwide. Cognitive dysfunction, neuropsychiatric symptoms, somatic complaints, and functional impairment...
The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic com...
The data were collected from September 2021 to February 2022 among 115 "PLwD-informal caregiver" dyads in the community settings in Slovakia. Measures included the Zarit Burden Interview (ZBI-12), the...
The mean age of informal caregivers was 54 ± 12.4 years (81.7% of women) and the mean caregiving duration was 4.8 ± 4.8 years. The mean age of PLwD was 80.5 ± 8.3 years (73.0% of women) and their Shor...
Implementing psycho-social and educational public health interventions focused on strengthening social support and maintaining positive perceptions of caregiving can help reduce the increased risk of ...
The study explores the meanings that family caregivers of people with dementia ascribe to the past, present, and future of their role as a caregiver, and how their integration into caregiving trajecto...
The literature demonstrates an association between aspects of caregiving and support with caregiver burden and differences by race. Our objective was to examine correlates of caregiver wellbeing, and ...
The National Study of Caregiving (NSOC) is a survey of unpaid and familial caregivers affiliated with participants in the National Health and Aging Trends Study, a nationally representative survey of ...
Among black caregivers with no family or friends to help, there were lower gains compared to very high gains (aOR: 2.82, 95% CI: 1.18, 6.77). Black and white caregivers who endorsed lower ratings rega...
The relationship between various correlates and positive aspects of caregiving is moderated by black and white races. Further study on the impact of aspects of caregiving and support networks for care...
We aimed to examine the psychosocial well-being in the pancreas cancer patient-caregiver dyad, and determine patient and caregiver characteristics that predict caregiver distress. This was a cross-sec...
During care, privacy is subject to physical or moral disrespect. This crucial right of the patient is increasingly neglected in the care-giver-patient relationship. However, it is observed that this i...
Informal caregivers of older adults experience a high degree of psychosocial burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving suppo...
We analyzed cross-sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults ≥65 years of age. Caregiver relationship status (i.e., spouse, child, other relative/n...
Our sample consisted of 1871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses a...
Our findings highlight the need to ensure that other caregiving groups, such as spouses and other relatives/non-relatives, have access to important supportive services such as financial support. Medic...
Parents of children with schizophrenia struggle with emotional, social, and economic burdens because they do not receive adequate support and experience difficulties....
To determine the caregiver burden experiences of parents who care for schizophrenic patients and to provide in-depth data on their feelings, thoughts, and opinions on this issue....
In this study, the phenomenological method was used. In-depth interviews were conducted with 13 parents. Maxqda 2020 was used for the analysis of the research data....
In our qualitative study, it was concluded that caregivers were stigmatized by their environment, exposed to social isolation, and stigmatized themselves. It has been determined that the social isolat...
The results of this study were discussed within the framework of three themes: emotional burden, social burden, and economic burden experienced by caregivers....
To estimate the association of the Veterans Health Administration (VHA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) implemented in 2011 with caregiver health and health care use....
VHA claims and electronic health records from May 2009 to May 2018....
Using a retrospective, pre-post study design with inverse probability of treatment weights to address selection into treatment, we examine the association of PCAFC on caregivers who are veterans: (1) ...
Not applicable....
In the year pre-application, we observe similar probabilities of having any VHA primary care (~36%), VHA specialty care (~24%), and VHA or VHA-purchased mental health care (~22%) for treatment and com...
Our findings that PCAFC enrollment is associated with increased health care diagnosis and service use may reflect improved access for previously unmet needs in the population of veteran caregivers for...
Family caregivers, who take care of older relatives, bear a heavy burden that can detrimentally affect their physical health and emotional well-being....
This study aims to explore the subjective perceptions of family caregiving's impact on physical health and emotional well-being, the experience of feeling overburdened by caregiving responsibilities, ...
The COPE Index items were used to measure subjective perceptions of the impact of caregiving on physical health and emotional well-being and perceptions of being overburdened by caregiving. We present...
In all three waves, the majority of respondents frequently or always perceived a negative impact of caregiving on their emotional well-being and physical health, with more than half always or often ex...
Our results demonstrate that the caregiving burden affects both physical and emotional well-being. A significant proportion of family caregivers experience detrimental effects on their physical health...
Caregiving can have negative consequences on the health of family caregivers. Our research underscores the importance of preventive measures. Orv Hetil. 2023; 164(40): 1583-1591....
