Ornstein, Katherine A.

BACKGROUND/OBJECTIVES Hospice care confers well‐documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end‐of‐life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING Contiguous United States.

The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers.

Although family satisfaction is recognized as a critical indicator of quality care for persons with serious illness, Spanish-language measures are limited. The study aims were to develop a Spanish translation of the short-form Family Satisfaction With End-of-Life Care (FAMCARE), investigate its psychometric properties in Hispanic caregivers to patients with Alzheimer's disease and related dementias (ADRD; N = 317; 209 interviewed in Spanish), and add parameters to an existing item bank. Based on factor analyses, the measure was found to be essentially unidimensional.

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01).

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would.

Objective: Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S.

Context. Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. Objectives. The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. Methods.

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid.

Context Family caregivers of individuals with serious illness who undergo intensive life-sustaining medical procedures at the end of life may be at risk of negative consequences including depression. Objectives The objective of this study was to determine the association between patients' use of life-sustaining procedures at the end of life and depressive symptoms in their surviving spouses. Methods We used data from the Health and Retirement Study, a longitudinal survey of U.S. residents, linked to Medicare claims data.

Objective: The purpose of this study was to describe distressed and underprepared family caregiver's use of and interest in formal support services (eg, professional counseling, education, organizational assistance). Method: Cross-sectional mail survey conducted in communities of 8 cancer centers in Tennessee, Alabama, and Florida (response rate: 42%).