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

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 (R2 = .52, ΔR2 = .32, F(5, 165) = 36.24, p < .001) and 24% of the variance in anxiety symptoms (R2 = .41, ΔR2 = .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 (R2 = .30, ΔR2 = .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.

Associations Among End-of-Life Discussions, Health-Care Utilization, and Costs in Persons With Advanced Cancer: A Systematic Review.

BACKGROUND: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer. OBJECTIVE: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures. METHODS: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included. RESULTS: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio [(OR] ranging 0.43-0.69); lower likelihood of intensive care at EOL (ORs ranging 0.26-0.68); lower odds of chemotherapy near death (ORs 0.41, 0.57); lower odds of emergency department use and shorter length of hospital stay; greater use of hospice (ORs ranging 1.79 to 6.88); and greater likelihood of death outside the hospital. Earlier EOL discussions (30+ days before death) are more strongly associated with less aggressive care outcomes than conversations occurring near death. CONCLUSIONS: End-of-life discussions are associated with less aggressive, less costly EOL care. Clinicians should initiate these discussions with patients having cancer earlier to better align care with preferences.

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

As Internet accessibility grows among adults in the United States, researchers' utilization of Internet-based surveys and recruitment strategies has increased, but there is a paucity of knowledge about their use in different age groups of former dementia caregivers. The purpose of this secondary analysis is to describe 1) the use of Internet-based recruitment in obtaining a sample inclusive of young and middle aged (age 18-64), young-old (age 65-74), and older-old (age 75 and older) former dementia caregivers and 2) the feasibility of collecting data using an online survey in young and middle aged, young-old, and older-old former dementia caregivers. Utilizing convenience sampling, a four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was employed. Participants (N = 171) completed an online survey. Older-old, young-old, and young and middle-aged participants comprised 9%, 30%, and 61% of the sample respectively. All age cohorts provided minimal missing data using an online survey, but older-old participants required 15 additional minutes to complete the survey than young-old participants. Both cohorts of older adults were directed to the survey less frequently through online referral sources than young and middle-aged participants, and no older-old participants were referred via Facebook. All three age cohorts consisted of mostly white women. Internet-based surveys and recruitment were feasible among the age groups but may present challenges for the older-old and minorities. Further research on Internet-based data collection and recruitment is indicated in minority and older-old caregivers, focusing on trust, educational and financial disparities, and technological proficiency as potential barriers.

When Caregiving Ends: The Experiences of Former Family Caregivers of People With Dementia.

PURPOSE OF THE STUDY: Numerous adverse physiological and psychological effects of family caregiving are documented in the literature. However, there is little knowledge about family caregivers after caregiving ends. The purpose of this study is to examine the health of former family caregivers and describe their experiences following the death of a care recipient with dementia. METHODS: Eight former family caregivers were recruited using convenience sampling. Each caregiver participated in one semi-structured interview ranging from 45 minutes to 3 hours in length. The interviews were audio recorded and transcribed for qualitative content analysis. RESULTS: Three overarching themes emerged from the data: (a) sleep disturbances, (b) changes in health status, and (c) learning to live again. Despite relief from caregiving duties, sleep disturbances in former family caregivers persisted for as long as 10 years post-caregiving. Caregivers reported changes in health such as acute health crises, ongoing illness, or a cascade of nonacute illnesses. Caregivers illustrated post-caregiving as a process of learning to live again, characterized by initial uncertainty about how to proceed in life and a reluctance to relinquish caregiving after years of identifying with the caregiver role. IMPLICATIONS: The results of this study suggest that there may be long-term effects of caregiving on health that persist well beyond the first year post-caregiving. Former caregivers would benefit from further research on the physical and psychological health of former caregivers after the first year of post-caregiving, the role of triggering events during post-caregiving, and interventions to meet the needs of former caregivers.

An exploration of caregiver choice through the lens of Sartrean existentialism.

There are innumerable social and ethical factors which affect one's decision to become an informal caregiver for someone with chronic illness. The existential philosophy of Jean-Paul Sartre provides unique insight into human motivation and choice. The purpose of this paper was to examine the social and ethical influences on the individual's decision to become a caregiver through the lens of Sartrean existentialism and discuss how this unique philosophy can advance nursing knowledge. The factors affecting one's choice to become a caregiver were considered using the Sartrean existential concepts of The Other, human freedom, choice, bad faith, shame and authenticity. When explored through the perspective of Sartrean existentialism, the choice to become a caregiver is strongly influenced by fear of judgement from The Other and the resulting sense of social obligation and shame. However, the interaction with The Other often results in the loss of authenticity through the pursuit of bad faith. To avert bad faith, potential caregivers must act authentically by exercising their freedom to choose and by choosing an action for its own sake and not for some extraneous purpose. The results of this philosophical inquiry contribute to nursing knowledge by providing a unique, alternative perspective by which nurses may understand the choices of potential caregivers and support them in making authentic decisions. This perspective may provide a foundation for theory development and promote further nursing knowledge which will improve caregiver health and well-being.