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Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death., Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross-sectional study of deceased older adults and last-month-of-life (LML) caregivers., Setting: United States; all places of deaths., Participants: Three-hundred and seventy-five decedents and 267 LML caregivers., Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care-related emotional difficulty)., Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269-0.724) and more daughters (OR: 0.743 [95% CI: 0.575-0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623-10.323])., Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end-of-life caregivers might improve patient and caregiver experiences for home and hospital deaths., (© 2021 The American Geriatrics Society.)

Background/objectives: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities., Design: Cross-sectional study., Setting: National telephone surveys administered from 2017 to 2019., Participants: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%)., Measurements: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning., Results: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain., Conclusion: Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system., (© 2020 The American Geriatrics Society.)

Background/objectives: Although several approaches have been developed to provide comprehensive care for persons living with dementia (PWD) and their family or friend caregivers, the relative effectiveness and cost effectiveness of community-based dementia care (CBDC) versus health system-based dementia care (CBDC) and the effectiveness of both approaches compared with usual care (UC) are unknown., Design: Pragmatic randomized three-arm superiority trial. The unit of randomization is the PWD/caregiver dyad., Setting: Four clinical trial sites (CTSs) based in academic and clinical health systems., Participants: A total of 2,150 English- or Spanish-speaking PWD who are not receiving hospice or residing in a nursing home and their caregivers., Interventions: Eighteen months of (1) HSDC provided by a nurse practitioner or physician's assistant dementia care specialist who works within the health system, or (2) CBDC provided by a social worker or nurse care consultant who works at a community-based organization, or (3) UC with as needed referral to the Alzheimer's Association Helpline., Measurements: Primary outcomes: PWD behavioral symptoms and caregiver distress as measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity and Modified Caregiver Strain Index scales., Secondary Outcomes: NPI-Q Distress, caregiver unmet needs and confidence, and caregiver depressive symptoms. Tertiary outcomes: PWD long-term nursing home placement rates, caregiver-reported PWD functional status, cognition, goal attainment, "time spent at home," Dementia Burden Scale-Caregiver, a composite measure of clinical benefit, Quality of Life of persons with dementia, Positive Aspects of Caregiving, and cost effectiveness using intervention costs and Medicare claims., Results: The results will be reported in the spring of 2024., Conclusion: D-CARE will address whether emphasis on clinical support and tighter integration with other medical services has greater benefit than emphasis on social support that is tied more closely to community resources. It will also assess the effectiveness of both interventions compared with UC and will evaluate the cost effectiveness of each intervention., (© 2020 The American Geriatrics Society.)

Background: Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well-being of the PWD-caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear., Objectives: We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers)., Design and Setting: A prospective cohort study with three time points of assessments (at 0, 6, and 12 months)., Participants: Family caregivers of community-dwelling PWD (n = 178)., Measurements: At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1-3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes., Results: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P < .001) and poorer QoL (P < .001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P = .006 and P = .746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P = .010 and P = .110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief., Conclusion: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect. J Am Geriatr Soc 68:2348-2353, 2020., (© 2020 The American Geriatrics Society.)