Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review

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Abstract

Objectives

Much is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD.

Design

Systematic review.

Data sources

Medline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched.

Eligibility criteria for selecting studies

Included studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers.

Data extraction and synthesis

Two independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach.

Results

A total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses.

Conclusions

Current evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence.

PROPSERO Registration Number: CRD 42018070032.

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Most cited references 49

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Caregiver burden among dementia patient caregivers: a review of the literature.

Lynn Etters, Debbie Goodall, Barbara Harrison (2008)

To identify current evidence of factors influencing dementia-related caregiver burden (CB), describe patient and caregiver characteristics associated with CB, and describe evidence-based interventions designed to lessen the burden of caregiving. Comprehensive literature review of Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Psych Info was performed for the years 1996-2006 of peer-reviewed journals using keywords CB and dementia. Dementia caregiving has been associated with negative effects on caregiver health and early nursing home placement for dementia patients. Many factors influence the impact of the caregiving experience such as gender, relationship to the patient, culture, and personal characteristics. Although various interventions have been developed with the goal of alleviating CB, evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization. The ability to properly assess the dementia patient-caregiver dyad related to CB is critical to decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.

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The experience of symptoms of depression in men vs women: analysis of the National Comorbidity Survey Replication.

Lisa A Martin, Harold Neighbors, Derek Griffith (2013)

When men are depressed they may experience symptoms that are different than what is included in the current diagnostic criteria. To explore whether sex disparities in depression rates disappear when alternative symptoms are considered in the place of, or in addition to, more conventional depression symptoms. DESIGN, SETTING, PARTICIPANTS, AND MAIN OUTCOMES AND MEASURES: Using data from the National Comorbidity Survey Replication, a nationally represented mental health survey, we evaluated sex differences in symptom endorsement in 2 new scales that included alternative depression symptoms. We analyzed sex differences in symptom endorsement using 2-sided, design-based, .05-level t tests and multivariate logistic regression to identify predictors of depression. RESULTS; Men reported higher rates of anger attacks/aggression, substance abuse, and risk taking compared with women. Analyses using the scale that included alternative, male-type symptoms of depression found that a higher proportion of men (26.3%) than women (21.9%) (P = .007) met criteria for depression. Analyses using the scale that included alternative and traditional depression symptoms found that men and women met criteria for depression in equal proportions: 30.6% of men and 33.3% of women (P = .57). When alternative and traditional symptoms are combined, sex disparities in the prevalence of depression are eliminated. Further study is needed to clarify which symptoms truly describe men's experiences of depression.

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Caring for a relative with dementia: family caregiver burden.

P Sourtzi, Haritini Tsangari, Evridiki Papastavrou … (2007)

This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalization. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Center for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68.02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.

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Author and article information

Contributors

Chen Xiong:

ORCID: http://orcid.org/0000-0003-3342-198X

Role: ConceptualizationRole: Formal analysisRole: Funding acquisitionRole: MethodologyRole: Project administrationRole: Writing – original draftRole: Writing – review & editing

Melissa Biscardi: Role: Formal analysisRole: MethodologyRole: Writing – review & editing

Arlene Astell: Role: Writing – review & editing

Emily Nalder: Role: MethodologyRole: Writing – review & editing

Jill I. Cameron: Role: Writing – review & editing

Alex Mihailidis: Role: Writing – review & editing

Angela Colantonio: Role: ConceptualizationRole: Funding acquisitionRole: MethodologyRole: Project administrationRole: SupervisionRole: Writing – review & editing

Anne McMunn: Role: Editor

Journal

Journal ID (nlm-ta): PLoS One

Journal ID (iso-abbrev): PLoS ONE

Journal ID (publisher-id): plos

Journal ID (pmc): plosone

Title: PLoS ONE

Publisher: Public Library of Science (San Francisco, CA USA )

ISSN (Electronic): 1932-6203

Publication date (Electronic): 20 April 2020

Publication date Collection: 2020

Volume: 15

Issue: 4

Electronic Location Identifier: e0231848

Affiliations

[1 ] Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, Toronto, Canada

[2 ] Toronto Rehabilitation Institute-University Health Network, Toronto, Canada

[3 ] Aquired Brain Injury Research Lab, University of Toronto, Toronto, Canada

[4 ] Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Canada

[5 ] Dalla Lana School of Public Health, University of Toronto, Toronto, Canada

University College London, UNITED KINGDOM

Author notes

Competing Interests: The authors have declared that no competing interests exist.

* E-mail: chen.xiong@ 123456mail.utoronto.ca

Author information

Chen Xiong http://orcid.org/0000-0003-3342-198X

Article

Publisher ID: PONE-D-20-01227

DOI: 10.1371/journal.pone.0231848

PMC ID: 7170244

PubMed ID: 32310969

SO-VID: 1121344a-e27a-4d48-a682-c4b7538edaba

License:

This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

History

Date received : 14 January 2020

Date accepted : 1 April 2020

Page count

Figures: 1, Tables: 2, Pages: 22

Funding

Funded by: funder-id http://dx.doi.org/10.13039/501100000029, Institute of Gender and Health;

Award ID: CGW-126580

Award Recipient : Angela Colantonio

Funded by: funder-id http://dx.doi.org/10.13039/501100000029, Institute of Gender and Health;

Award ID: SGB-155385

Award Recipient : Angela Colantonio

The study was funded by the Canadian Institutes of Health Research (CIHR) under Grant SGB – 155385 (PI: Angela Colantonio). AC is supported by the CIHR Chair in Gender, Work and Health [grant no. CGW-126580]. CX is supported by the Frederick Banting & Charles Best Canada Graduate Scholarships-Doctoral Award. Dr. Nalder holds a March of Dimes Canada Paul J.J. Martin Early Career Professorship in the Department of Occupational Science and Occupational Therapy at the University of Toronto and a Canada Research Chair (Tier 2) in Resiliency and Rehabilitation. The funders had no role in study design, data collection, decision to publish, or preparation of the manuscript.

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Data Availability All relevant data are within the manuscript and its Supporting Information files.

Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review

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Abstract

Objectives

Design

Data sources

Eligibility criteria for selecting studies

Data extraction and synthesis

Results

Conclusions

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PLOS Global Public Health

Most cited references 49

Caregiver burden among dementia patient caregivers: a review of the literature.

The experience of symptoms of depression in men vs women: analysis of the National Comorbidity Survey Replication.

Caring for a relative with dementia: family caregiver burden.

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