Predictors of psychological distress and sleep quality in former family caregivers of people with dementia

Abstract

Objectives:The stress-related psychological symptoms experienced by informal family caregivers do not always improve or resolve after the death of the care recipient. The purpose of this study was to explore the independent associations of sociodemographic variables, personality and coping, environmental variables, and caregiver guilt with the sleep quality and psychological distress of former family caregivers of individuals with dementia following care recipient's death. Method:A cross-sectional, correlational study was conducted with a sample of 171 former family caregivers of people with dementia. Participants completed an online survey comprised of six instruments and demographic items. Caregiver personal variables (e.g. personality and coping), environmental variables, guilt, psychological distress (depressive and anxiety symptoms), and sleep quality were evaluated using psychometrically validated measures. Results:In bivariate analysis, post-caregiving guilt was significantly associated with depressive and anxiety symptoms (p < 0.01). After controlling for covariates, dysfunctional coping and neuroticism explained 32% of the variance in depressive symptoms (R 2 = .52, ΔR 2 = .32, F(5, 165) = 36.24, p < .001) and 24% of the variance in anxiety symptoms (R 2 = .41, ΔR 2 = .24, F(5, 165) = 22.65, p < .001), while dysfunctional coping, pre-loss depression, and extraversion accounted for 16% of the variance in sleep quality (R 2 = .30, ΔR 2 = .16, F(6, 164) = 11.44, p < .001). Conclusion:This study demonstrates the critical role of personal variables, including personality traits, coping strategies, and pre-loss depression, in explaining psychological distress and sleep quality in this sample of former dementia caregivers.

Utilizing Internet-based recruitment and data collection to access different age groups of former family caregivers

“…This study is a secondary analysis of the recruitment methods and completeness of data collected from former family caregivers of persons with dementia. The parent study aim was to explore associations between caregiver characteristics, psychological distress, and sleep quality (Corey et al, in press). Participants in the parent study were eligible for the study if they: were age 18 or older, were English speaking, provided informal, unpaid care to a person with dementia for at least six consecutive months prior to the care recipient’s death, and if the care recipient was deceased.…”

The Expert Caregiver Intervention Targeting Former Caregivers in Finland: A Co-Design and Feasibility Study Using Mixed Methods

“…A future study with a larger group of participants should continue to assess the effects on well-being outcomes and analyse whether this type of intervention is more suitable for certain subgroups of individuals with experience of informal caregiving. Previous research on former caregivers in general suggests that the post-caregiving experiences and outcomes may depend on, amongst other things, the characteristics of the past caregiving situation such as pre-loss levels of social support [ 8 , 9 ], pre-loss levels of depressive symptoms [ 7 , 9 ], and whether the care recipient died in the preferred setting [ 44 ].…”

“…The fact that the participants reported high scores on well-being is also in line with previous studies on post-caregiving health in general suggesting that for most former caregivers, adverse effects associated to intensive caregiving diminish with time [ 8 , 9 , 45 ]. Still, studies have also found that for some post-caregivers, negative health effects [ 7 , 8 , 9 , 44 , 45 ] such as insomnia, depressive symptoms, and feelings of guilt may prevail, even for as long as up to 10 years [ 7 ]. The specific needs of such vulnerable former caregivers should be further studied and met in interventions where they are the end-users.…”

“…Given the high prevalence of informal caregivers throughout Europe [ 2 , 6 ], a considerable proportion of the population are also former caregivers, that is, caregivers who have ceased caring as the care recipient has died or been admitted to a nursing home. Negative health effects such as insomnia and depressive symptoms may prevail post-caregiving [ 7 ], but most former caregivers seem to recover from such effects within one to two years [ 8 , 9 ]. In fact, it is not uncommon for former caregivers to take up the caregiving role again or at least report being ready to do so if needed [ 10 , 11 ].…”

“…Public Health 2021, 18, 10133 2 of 19 nursing home. Negative health effects such as insomnia and depressive symptoms may prevail post-caregiving [7], but most former caregivers seem to recover from such effects within one to two years [8,9]. In fact, it is not uncommon for former caregivers to take up the caregiving role again or at least report being ready to do so if needed [10,11].…”