Dataset Information

Stress, Burden, and Well-Being in Dementia and Nondementia Caregivers: Insights From the Caregiving Transitions Study.

ABSTRACT:

Background and objectives

Few population-based studies have directly compared caregivers of persons with dementia to caregivers of persons with other disabilities (nondementia caregivers). We enrolled dementia and nondementia caregivers who were providing substantial and sustained care and compared these groups on measures of caregiver stressors, appraisals of burden, and well-being.

Research design and methods

Caregivers (N = 251) who provided continuous care for at least 1 year and at least 5 h per week were recruited from the population-based REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Caregivers reported on dementia caregiving status, stressors, burden, and well-being.

Results

Forty-seven percent (n = 117) reported caring for a person with dementia. Dementia caregivers reported more stressors, providing more care for self-care and behavioral problems than nondementia caregivers. Dementia caregivers also reported higher appraisals of stress and burden, and more depressive symptoms, but did not differ from nondementia caregivers on mental and physical health quality of life. In multivariable-adjusted models, adjustment for the total number of care recipient problems attenuated differences between dementia and nondementia caregivers on burden and depression measures.

Discussion and implications

Dementia and nondementia caregivers showed relatively few differences in indicators of overall well-being in this population-based sample, perhaps because both groups of caregivers in this study were providing substantial care. Dementia caregivers may require special assistance with dementia-specific problems such as behavioral problems. Clinical interventions and policy changes targeting highly burdened caregivers are needed to support them in allowing their care recipients to age in place at home.

SUBMITTER: Sheehan OC

PROVIDER: S-EPMC8276607 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Background/objectivesFew studies have rigorously examined the magnitude of changes in well-being after a transition into sustained and substantial caregiving, especially in population-based studies, compared with matched noncaregiving controls.DesignWe identified individuals from a national epidemiological investigation who transitioned into caregiving over a 10- to 13-year follow-up and provided continuous in-home care for at least 18 months and at least 5 hours per week. Individuals who did not become caregivers were individually matched with caregivers on age, sex, race, education, marital status, self-rated health, and history of cardiovascular disease at baseline. Both groups were assessed at baseline and follow-up.SettingREasons for Geographic And Racial Differences in Stroke study.ParticipantsA total of 251 incident caregivers and 251 matched controls.MeasurementsPerceived Stress Scale (PSS), 10-Item Center for Epidemiological Studies-Depression (CES-D), and 12-item Short-Form Health Survey quality-of-life mental (MCS) and physical (PCS) component scores.ResultsCaregivers showed significantly greater worsening in PSS, CES-D, and MCS, with standardized effect sizes ranging from 0.676 to 0.796 compared with changes in noncaregivers. A significant but smaller effect size was found for worsening PCS in caregivers (0.242). Taking on sustained caregiving was associated with almost a tripling of increased risk of transitioning to clinically significant depressive symptoms at follow-up. Effects were not moderated by race, sex, or relationship to care recipient, but younger caregivers showed greater increases in CES-D than older caregivers.ConclusionPersons who began substantial, sustained family caregiving had marked worsening of psychological well-being, and relatively smaller worsening of self-reported physical health, compared with carefully matched noncaregivers. Previous estimates of effect sizes on caregiver well-being have had serious limitations due to use of convenience sampling and cross-sectional comparisons. Researchers, public policy makers, and clinicians should note these strong effects, and caregiver assessment and service provision for psychological well-being deserve increased priority.

Project description:BackgroundMobile technology to address caregiver needs has been on the rise. There is limited evidence of effectiveness of such technologies on caregiver experiences.ObjectiveThis study evaluates the effectiveness of ianacare, a mobile app, among employees of a large employer. ianacare mobilizes personal social circles to help with everyday tasks. Through the use of ianacare, we evaluate the associations between coordinating caregiving tasks among a caregiver's personal support network and outcomes related to the caregiver's support system, time use, perceived productivity, and perceived health and well-being. Caregiver tasks include tasks such as meal preparation, respite care, pet care, and transportation. Time use is the measure of a caregiver's time spent on caregiving tasks and how much time they had to take off from work to attend planned or unplanned caregiving tasks.MethodsWe conducted 2 surveys to assess within-participant changes in outcomes for the unpaid, employed, caregivers after 6 weeks of using the mobile app (n=176) between March 30, 2020, and May 11, 2020. The surveys contained questions in three domains: the caregiver's support system, time use and perceived productivity, and perceived health and well-being. The results of the linear probability models are presented below.ResultsApp use was significantly associated with decreasing the probability of doing most caregiving tasks alone by 9.1% points (SE 0.04; P=.01) and increasing the probability of at least one person helping the primary caregiver by 8.0% points (SE 0.035; P=.02). App use was also associated with improving the time use of the primary caregiver who took significantly less time off work to attend to caregiving duties by 12.5% points (SE 0.04; P=.003) and decreased the probability of spending more than 30 hours weekly on caregiving by 9.1% points (SE 0.04; P=.02). Additional findings on the positive impact of the app included a decrease in the probability of reporting feeling overwhelmed by caregiving tasks by 12.5% points (SE 0.04; P=.003) and a decrease in the probability of reporting negative health effects by 6.8% points (SE 0.04; P=.07) because of caregiving. Although subjects reported that COVID-19 increased their stress attributed to caregiving and prevented them from requesting help for some caregiving tasks, using the app was still associated with improvements in receiving help and lessening of the negative effects of caregiving on the caregivers.ConclusionsApp use was associated with improvements in 7 of 11 caregiver outcomes across three main categories: their support system, time spent on caregiving, and perceived health and well-being. These findings provide encouraging evidence that the mobile app can significantly reduce caregiver burden by leveraging a caregiver's support network despite the additional challenges brought by COVID-19 on caregivers.