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Digital tools for delivery of dementia education for caregivers of persons with dementia: A systematic review and meta-analysis of impact on caregiver distress and depressive symptoms.

ABSTRACT: Continuing education for dementia has been shown to be beneficial by improving informal caregiver knowledge, dementia care, management, and caregiver physical and mental health. Technology-based dementia education has been noted to have equivalent effects as in-person education, but with the added benefit of asynchronous and/or remote delivery, which increases accessibility. Using Cochrane review methodology, this study systematically reviewed the literature on technology-based dementia education and its impacts on caregivers. Technology-based delivery included dementia education delivered via the Internet, telephone, telehealth, videophone, computer, or digital video device (DVD). In the review, twenty-eight studies were identified with fourteen included in a meta-analysis, and these data revealed a significant small effect of technologically based dementia education on reducing caregiver depression, and a medium effect on reducing caregiver distress in response to caregivers' observations of behavioral problems displayed by persons with dementia. No evidence was found for a significant effect of the educational intervention on caregiver burden or self-efficacy, which are known to be gendered aspects of caregiving. None of the studies included in the meta-analysis reported separate outcomes for male and female care providers, which has implications for gendered caregiving norms and aspects of care. Registration number: PROSPERO 2018 CRD42018092599.

SUBMITTER: Scerbe A

PROVIDER: S-EPMC10191337 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Digital tools for delivery of dementia education for caregivers of persons with dementia: A systematic review and meta-analysis of impact on caregiver distress and depressive symptoms.

Scerbe Andrea A O'Connell Megan E ME Astell Arlene A Morgan Debra D Kosteniuk Julie J Panyavin Ivan I DesRoches Andrea A Webster Claire C

PloS one 20230517 5

Continuing education for dementia has been shown to be beneficial by improving informal caregiver knowledge, dementia care, management, and caregiver physical and mental health. Technology-based dementia education has been noted to have equivalent effects as in-person education, but with the added benefit of asynchronous and/or remote delivery, which increases accessibility. Using Cochrane review methodology, this study systematically reviewed the literature on technology-based dementia educatio ...[more]

PMID: 37196022

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Project description:Background and objectivesCaregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep.Research design and methodsWe conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized.ResultsThe search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain.Discussion and implicationsAlthough subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.

Project description:There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development.We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis.We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future.Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

Project description:BackgroundCaregivers of persons with dementia (PWD) face high caregiving burden, distress related to responsive behaviours, and psychiatric morbidity. The present paper examines how these are associated with healthcare utilization of the PWD in Singapore.MethodsThe data of 399 caregiver-PWD dyads were extracted from a national cross-sectional survey. PWD completed the Client Service Receipt Inventory, which provided information on their healthcare utilization (i.e. emergency service use, hospital admission, length of stay in hospital, and number of outpatient visits) within a frame of 3 months. The Zarit Burden Interview (ZBI), Neuropsychiatric Inventory Questionnaire (NPI-Q), and Self Reporting Questionnaire (SRQ-20) were administered to caregivers. Information on severity of dementia, physical multimorbidity of the PWD, household composition, and caregivers' sociodemographic characteristics such as age, gender, and education were collected. Variables significantly associated with healthcare utilization in the univariate analyses were selected and included in the final regression models. Emergency service use and hospital admission were investigated using logistic regression analyses, whilst negative binomial models were utilized for length of stay in hospital and number of outpatient visits.ResultsAfter adjusting for significant correlates such as dementia severity and multimorbidity, only caregiver distress from responsive behaviours was positively associated with emergency room utilization, while caregiver burden was positively associated with length of hospital stay in the final regression model. Psychiatric morbidity was associated with healthcare utilization outcomes at the univariate level but did not reach statistical significance in final models.ConclusionThe study identifies caregiver variables associated with the healthcare utilization of PWD. Policy makers and healthcare professionals should provide interventions to ease burden and distress amongst caregivers of PWD.

Project description:BackgroundStress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress.ObjectiveIn this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study.MethodsUsing the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses.ResultsIn phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025.ConclusionsWe describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial.Trial registrationClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023.International registered report identifier (irrid)DERR1-10.2196/58356.

Dataset Information

Digital tools for delivery of dementia education for caregivers of persons with dementia: A systematic review and meta-analysis of impact on caregiver distress and depressive symptoms.

Publications

Digital tools for delivery of dementia education for caregivers of persons with dementia: A systematic review and meta-analysis of impact on caregiver distress and depressive symptoms.

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