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Objectives: The Behavioral Risk Factor Surveillance System sampled 54,076 caregivers between 2015 and 2017 providing an opportunity to evaluate risk factors for poor mental and physical health among a representative sample of U.S. adult caregivers. This study aimed to evaluate the impact of childcare, work status, and intensity of caregiving among men and women caring for older adults (n = 17,271)., Methods: Controlling for sociodemographic factors, separate logistic regression analysis for women and men were carried out to assess the main and interaction effects of childcare, work status, and intensity of caregiving on number of poor mental and physical health days in the last month., Results: Intensive caregiving demands had adverse effects on both women and men, but being in the workforce was beneficial to both men and women. Women with children at home reported adverse mental health effects but better physical health, while men with children at home reported adverse physical health effects. For women, the combination of not working, children in the household, and high-intensity caregiving were most detrimental to their mental health. Among men, those not working with children in the household, regardless of caregiving intensity, were at highest risk of adverse mental health effects., Discussion: Our findings identify caregivers at high risk of adverse outcomes but also point to the need for more fine-grained analyses of how families negotiate the allocation of childcare, work, and caregiving responsibilities over time., (Published by Oxford University Press on behalf of The Gerontological Society of America 2023.)

Compassion has been suggested as a relevant variable for understanding dementia caregivers' psychological distress. The objectives were to analyse the psychometric properties of the Caregiving Compassion Scale (CCS) and to explore the association between caregivers' compassion and their emotional health. Two hundred and thirty-six dementia caregivers were evaluated for compassion, depressive symptoms, guilt, ambivalence, care-recipient's functional and cognitive status, frequency of behavioural problems and desire to institutionalise the care-recipient. Exploratory factor analyses, correlations and regression analyses were done. Two factors were obtained. The factor labelled "Distress from witnessing the care recipient suffering" was associated with higher stress linked to witness depressive problems in the care-recipient and with caregivers' ambivalence and guilt levels. The factor labelled "Motivation/disposition for helping" was associated with less desire for institutionalisation, and it showed a negative association with ambivalence and guilt feelings. The CCS seems to be a valid and reliable scale for assessing compassion in dementia caregivers., (© 2021 John Wiley & Sons Ltd.)

This work extends research suggesting a link between indicators of distress among informal caregivers (CG) (e.g., depression and burden), and potentially harmful behaviors (PHB), including feeling like yelling or screaming at the care recipient (CR). We tested three hypotheses regarding the role of a novel predictor, CG preparedness for caregiving, which were: 1) a direct effect between CG preparedness and PHB, 2) CG distress mediates the relationship between the direct effect of CG preparedness on PHB, and finally, 3) CG preparedness is only related to PHB through their shared associations with indicators of caregiver distress, an indirect effects model. Examining two indicators of PHB and CG depression and CG burden, results supported the indirect effects model. Higher CG preparedness was associated with lower CG distress, which in turn was associated with lower risk of PHB. These findings highlight the importance of CG preparedness as a target for caregiver intervention research.

Hospital practitioners rely on care partners of older adults to provide complex care without identifying and addressing their needs. The Care Partner Hospital Assessment Tool (CHAT) was developed to identify the education skill training needs of care partners of hospitalized older adults. This two-phased mixed-method study evaluated the appropriateness and feasibility of the CHAT. The phase 1 quantitative survey with caregiving experts indicated 70-100% agreement for the length and helpfulness of the CHAT ( n = 23). These results were supported by phase 2 qualitative interviews with hospital administrators and practitioners, which revealed the following themes: (1) intuitive and clear design worth sustaining and (2) concerns and proposed solutions for implementation. Findings suggest the CHAT is an appropriate and feasible tool for hospital practitioners to tailor their education and skills training to address care partners' needs. Identifying care partners' needs is an important step in ensuring they are prepared to complete their caregiving responsibilities.

Objective: Assess a conceptual model linking caregiving factors to care recipient mortality in a large representative sample of older adults with disability., Design: Descriptive longitudinal study with 5-year mortality follow-up among older adults with disability. Baseline in person and telephone interviews/assessments of older adults with disability and their family caregivers carried out in 2011., Setting: Representative samples of older US population and their family caregivers., Participants: US representative samples of older adults with disability aged 65 and over (National Health and Aging Study) and their family caregivers (National Study of Caregiving; www.nhats.org; N = 1,262)., Measurement: Controlling for known risk factors for mortality in older adults, including age, gender, race, education, socioeconomic status, disability, and cognitive status, we assess the role of three caregiving factors (depression, anxiety, and burden) and three mediating factors (care recipient depression, anxiety, and unmet needs for care) as predictors of care recipient mortality., Results: Caregiver burden, care recipient depression, and care recipient unmet needs are independent predictors of care recipient mortality., Conclusion: Caregiving factors may play an important role in the survival of their care recipients. This is a relatively unexplored research area that calls for fine-grained studies capturing caregiver-care recipient health-related interactions over time., (Copyright © 2020 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

A systematic review was conducted to characterize assessments for caregivers of hospitalized older adults. Electronic literature searches of Medline, PsycINFO, and CINAHL of articles on caregiver assessments published in English between 2006 and present were completed. Thirty-three articles underwent full-text review; four included assessments designed to capture caregiver needs in hospital settings. Original articles on the development of these assessments were reviewed for quality appraisal. Four findings emerged from our review. Existing assessments (a) focus on caregivers of specific conditions of older adults, (b) contain a singular caregiving domain, (c) measure caregiver outcomes or simply describe caregiving experiences, and (d) neglect psychometric properties. Health care providers are limited in their selection of assessments with caregivers of hospitalized older adults. This barrier is problematic if we are to equip caregivers to be successful at providing care to older adults. Future research should develop a hospital assessment for caregivers.

Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF-tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient's symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

This study examined, with a sample of older adult, caregiving couples, whether each spouse's health was associated with their own and their partner's relationship satisfaction. Dyads ( n  = 233; age = 64-99 years) in the Caregiver Health Effects Study, ancillary to the Cardiovascular Health Study, reported relationship satisfaction, depressive symptoms, disability, and self-reported health. The cross-sectional Actor-Partner Interdependence Model showed that for both caregivers and care recipients, greater depressive symptoms and lower self-reported health related to lower relationship satisfaction (actor effects). Caregivers had lower relationship satisfaction when they were more disabled (actor effect) and when care recipients were more depressed (partner effect).

Background and Objectives: Older adults face significant long-term care and health care costs. But some of these costs can potentially be offset through family caregivers who may serve as substitutes for formal care or directly improve the care recipient's health and reduce health care utilization and expenditures. This article reviews the current literature to determine whether it is possible through existing work to compare the costs of care for individuals with versus without family caregivers and, if not, where the data, measurement, and other methodological challenges lie., Research Design and Methods: A mapping review of published works containing information on health care utilization and expenditures and caregiving was conducted. A narrative approach was used to review and identify methodological challenges in the literature., Results: Our review identified 47 articles that met our criteria and had information on caregiving and health care costs or utilization. Although findings were mixed, for the most part, having a family caregiver was associated with reduced health care utilization and a decreased risk of institutionalization however, the precise difference in health care expenditures for individuals with caregivers compared to those without was rarely examined, and findings were inconsistent across articles reviewed., Discussion and Implications: The number of family caregivers providing care to loved ones is expected to grow with the aging of the Baby Boomers. Various programs and policies have been proposed to support these caregivers, but they could be costly. These costs can potentially be offset if family caregivers reduce health care spending. More research is needed, however, to quantify the savings stemming from family caregiving., (© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

The overall aim of this pilot study was to examine the feasibility and acceptability of a multicomponent, psychosocial intervention specifically designed to meet the unique needs of caregivers who are balancing caregiving duties with work responsibilities. Seventy-one family caregivers employed at a private, nonprofit institution in South Florida were randomized to either the Caregiver Workstation condition ( n = 35) or a control condition ( n = 36). Sixty-two caregivers completed the 5-month follow-up. Our results indicate that an intervention tailored to the time demands of a working caregiver is feasible, acceptable to caregivers, and has the potential to have positive long-term effects. Currently, there are limited data available regarding the benefits of employer programs for caregivers or the type of programs caregivers find most useful. This pilot study is the first step in developing a working caregiver intervention program that can be implemented on a broad-scale basis.

Objective: After an extended period of caregiving, the death of a family member with dementia can provide a sense of relief to individuals because caregiving has ended and their loved one is no longer suffering. Little is known about predeath factors associated with feeling relieved after the death of a family member with dementia. This study examined 1) predeath factors associated with caregiver (CG) relief; and 2) whether CG relief is associated with postbereavement adjustment, namely complicated grief and depression symptoms., Methods: Participants were bereaved CGs aged 28-90 years old drawn from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) (N = 223) and Family Caregiver Transition Support (FaCTS) (N = 89) studies. In each sample, demographics were assessed at baseline, and CG relief was assessed at the first follow-up assessment after death. Each study administered a similar bereavement battery to CGs following the death of their care recipients (CRs)., Results: CGs of late-stage dementia patients (FaCTS) reported more relief compared with CGs of early- to midstage dementia patients (REACH). CGs were more likely to experience relief if they were prepared for their CR's death and if they perceived their CR's death to be a relief to the CR. A multivariate regression model showed that greater CG relief was associated with less complicated grief postbereavement. CG relief was not significantly associated with depression symptoms., Conclusion: We show prospectively that the caregiving experience impacts feelings of relief, and that feeling relieved facilitates postbereavement adjustment by lessening symptoms of complicated grief., (Copyright © 2019 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Objective: The aim of this study was to evaluate the association between noncustodial grandparent caregiving and cognition using the Health and Retirement Study (HRS), a population-based study of older adults. Method: Participants were White and African American grandparents aged ≥65 years. Only noncustodial grandparents who reported not living with their grandchildren over the three waves were included in our analyses. Grandparent caregiving status and cognition were assessed in 2006, 2008, and 2010. Analyses controlled for demographics, baseline health, depressive symptoms, and baseline cognition. Results: Both the number of waves of grandparent caregiving and the total number of grandparent caregiving hours across the three waves were associated with better cognitive functioning at 4-year follow-up in 2010. Associations were observed among Whites, but not among African Americans. Discussion: This study uses longitudinal data to evaluate the association between grandparent caregiving and cognitive functioning. Findings suggest that providing care may be beneficial for some grandparents.

This prospective study examined predictors and correlates of restorative activities in recently bereaved caregivers and their relation to post-bereavement adjustment, namely complicated grief. Participants included 89 caregivers (CGs) age 32-87 (M age - 63 years) whose care recipients recently died in a long-term care facility (M time since loss = 107 days). Our findings show that being prepared prior to death enables CGs the opportunity to engage in restorative activities post death. Restorative activities partially mediated the relationship between preparedness prior to death and complicated grief, but this association was attenuated in multivariable models. It is possible that being prepared prior to death allows CGs to engage in restorative activities post-death, which in turn decreases complicated grief. More research is needed in diverse populations of CGs to determine how restorative activities may impact post-bereavement adjustment., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: Latinos comprise a growing segment of the caregiver population and vary widely in acculturation, yet little is known regarding how acculturation might affect caregiver stress or intervention outcomes. This study examined the relationship between acculturation and burden, bother, and depression in Latino dementia caregivers at baseline and following an intervention., Methods: This was a secondary data analysis of 211 Latino caregivers of older adults with dementia from Resources for Enhancing Alzheimer's Caregiver Health (REACH) II, a multisite randomized trial of caregiver interventions. Baseline and follow-up data were used to run mixed-effects models examining the main and moderating effect of acculturation on caregiver stress., Results: No significant main effect of acculturation was found for any of the outcome measures, controlling for demographic covariates. Acculturation moderated the effect of the intervention on caregiver burden: those who were more acculturated benefited more from the intervention., Conclusion: Differential acculturation for Latino caregivers was not directly associated with caregiver burden, bother, or depression, but was associated with reducing burden from the intervention. Future research should explore by what mechanism acculturation influences caregiver burden following an intervention.

Background and Objectives: Family caregivers (CGs) are critical to the provision of long-term services and support for older adults. Numerous intervention programs to alleviate CG distress have been developed and evaluated yet few have been implemented in community settings. This paper describes and presents outcomes from Community REACH, a community implementation of the evidence-based Resources for Enhancing Alzheimer's Caregiver Health (REACH) II program., Research Design and Methods: Community REACH involved a partnership between REACH II investigators and United HomeCare Services (UHCS), a nonprofit home health organization that provides home health, personal care, companion, and respite services. The intervention program, an adapted version of an evidence-based program, was a 6-month multicomponent psychosocial intervention, which involved six individual face-to-face and six individual telephone sessions, and telephone support groups. One hundred and forty-six CGs who were primarily female (76%) and Latino, and providing care for an individual with Alzheimer's disease (AD) were enrolled. Program effectiveness was assessed by examining changes in perceived social support, burden, and depression, and CG self-efficacy., Results: At 6 months, CGs reported significant decreases in depression, burden, being and bothered by the care recipient's memory problems. There was also a significant decline in the number of CGs at risk for clinical depression. These improvements were maintained at 12 months and there was an increase in feelings of social support., Discussion and Implications: The findings indicate that evidence-based CG programs can be successfully implemented in community settings and benefit CGs of AD patients. A continued partnership between the program developers and community partners is key to implementation success.

Background: Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures., Objective: We examine the role of caregivers in existing systems of care, identify needed changes in structures and processes, and describe how these changes might be monitored and assessed and who should be accountable for implementing them., Design: Based on a broad assessment of the caregiving literature, the recent National Academy of Sciences Report on family caregiving, and descriptive data from two national surveys, we describe structural and process barriers that limit caregivers' ability to provide effective care., Subjects: To describe the unique challenges and impacts of caring for seriously ill patients, we report data from a nationally representative sample of older adults and their caregivers (National Health and Aging Trends Study [NHATS]; National Study of Caregiving [NSOC]) to identify the prevalence and impact on family caregivers of seriously ill patients who have high needs for support and are high cost to the healthcare system., Measurements: Standardized measures of patient status and caregiver roles and impacts are used., Results: Multiple structural and process barriers limit the ability of caregivers to provide effective care. These issues are exacerbated for the more than 13 million caregivers who provide care and support to 9 million seriously ill older adults., Conclusions: Fundamental changes are needed in the way we identify, assess, and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of healthcare and long-term service providers to effectively engage caregivers.

The authors of this review both served on the National Academy of Science, Engineering, and Medicine Committee that produced the report, "Caring for an Aging America". In this commentary we summarize key findings and recommendations most relevant to clinicians and researchers in geriatric psychiatry and related disciplines. The report notes the growing prevalence of family caregiving in the United States, especially those caring for high-need patients with multiple chronic conditions, disability, and/or cognitive impairment. To support the capacity of family caregivers to perform critical caregiving tasks, the report recommends a major shift in healthcare policy toward collaborative partnerships among patients, their defined family, and providers of care. Optimizing the role of family caregivers will minimally require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process. Research is needed to develop the tools and protocols to efficiently assess caregivers, and identify ways in which they can be integrated into existing clinical practices. We also need research to identify how to best implement, maintain, and evaluate caregiver support programs within clinical and community settings. The Centers for Medicare and Medicaid Services should be charged with developing, testing, and implementing provider payment reforms that motivate providers to engage and support family caregivers. Payment reforms should include clearly articulated performance standards that hold providers accountable for caregiver engagement, training, and support by explicitly including caregiver outcomes in quality measures., (Copyright © 2017 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Depression is associated with disturbances to sleep and the 24-h sleep-wake pattern (known as the rest-activity rhythm: RAR). However, there remains a need to identify the specific sleep/RAR correlates of depression symptom severity in population subgroups, such as strained dementia caregivers, who are at elevated risk for major depressive disorder. We assessed the cross-sectional associations of sleep/RARs with non-sleep depression symptom severity among 57 (mean age: 74 years, standard deviation: 7.4) strained dementia caregivers who were currently without clinical depression. We derived sleep measures from polysomnography and actigraphy, modelled RARs using a sigmoidally transformed cosine curve and measured non-sleep depression symptom severity using the Hamilton Depression Rating Scale (HRDS) with sleep items removed. The following sleep-wake measures were associated with greater depression symptom severity (absolute Spearman's correlations ranged from 0.23 to 0.32): more time awake after sleep onset (WASO), higher RAR middle level (mesor), relatively shorter active periods (alpha), earlier evening settling time (down-mesor) and less steep RARs (beta). In multivariable analysis, high WASO and low RAR beta were associated independently with depression symptom severity. Predicted non-sleep HDRS means (95% confidence intervals) in caregivers with and without these characteristics were: normal WASO/beta = 3.7 (2.3-5.0), high WASO/normal beta = 5.5 (3.5-7.6), normal WASO/low beta = 6.3 (3.6-8.9) and high WASO/low beta = 8.1 (5.3-10.9). Thus, in our sample of strained caregivers, greater sleep fragmentation (WASO) and less sustained/sharply segregated resting and active periods (low RAR beta) correlate uniquely with depression symptom severity. Longitudinal studies are needed to establish whether these independent sleep-wake correlates of depression symptoms explain heightened depression risk in dementia caregivers., (© 2017 European Sleep Research Society.)

Objectives: Exposure to suffering of a relative or friend increases the risk for psychological and physical morbidity. However, little is known about the mechanisms that account for this effect. We test a theoretical model that identifies intrusive thoughts as a mediator of the relation between perceived physical and psychological suffering of the care recipient and caregiver depression. We also assess the role of compassion as a moderator of the relation between perceived suffering and intrusive thoughts., Methods: Hispanic and African American caregivers (N = 108) of persons with dementia were assessed three times within a one-year period. Using multilevel modeling, we assessed the mediating role of intrusive thoughts in the relation between perceived physical and psychological suffering and CG depression, and we tested moderated mediation to assess the role of caregiver compassion in the relation between perceived suffering and intrusive thoughts., Results: The effects of perceived physical suffering on depression were completely mediated through intrusive thoughts, and compassion moderated the relation between physical suffering and intrusive thoughts. Caregivers who had greater compassion reported more intrusive thoughts even when perceived physical suffering of the CR was low. For perceived psychological suffering, the effects of suffering on depression were partially mediated through intrusive thoughts., Discussion: Understanding the role of intrusive thoughts and compassion in familial relationships provides new insights into mechanisms driving caregiver well-being and presents new opportunities for intervention.

Objectives: To determine the effect of integrating informal caregivers into discharge planning on postdischarge cost and resource use in older adults., Design: A systematic review and metaanalysis of randomized controlled trials that examine the effect of discharge planning with caregiver integration begun before discharge on healthcare cost and resource use outcomes. MEDLINE, EMBASE, and the Cochrane Library databases were searched for all English-language articles published between 1990 and April 2016., Setting: Hospital or skilled nursing facility., Participants: Older adults with informal caregivers discharged to a community setting., Measurements: Readmission rates, length of and time to post-discharge rehospitalizations, costs of postdischarge care., Results: Of 10,715 abstracts identified, 15 studies met the inclusion criteria. Eleven studies provided sufficient detail to calculate readmission rates for treatment and control participants. Discharge planning interventions with caregiver integration were associated with a 25% fewer readmissions at 90 days (relative risk (RR) = 0.75, 95% confidence interval (CI) = 0.62-0.91) and 24% fewer readmissions at 180 days (RR = 0.76, 95% CI = 0.64-0.90). The majority of studies reported statistically significant shorter time to readmission, shorter rehospitalization, and lower costs of postdischarge care among discharge planning interventions with caregiver integration., Conclusion: For older adults discharged to a community setting, the integration of caregivers into the discharge planning process reduces the risk of hospital readmission., (© 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.)

Objective: To evaluate the association between brain structural markers and caregiving strain among older informal caregivers., Design: A secondary data analysis combining data from the Caregiver Health Effects Study (1993-1994) and the Cardiovascular Health Study MRI examination (1992-1994)., Setting: Four United States communities., Participants: Co-residing spousal caregivers (N = 237; mean age: 76.2 years, SD: 2.2 years)., Measurements: Visually rated ventricular and white matter (WM) grades from magnetic resonance imaging, caregiving strain defined as "emotional or physical strain associated with providing care" for any of 12 activities of daily living (ADLs) and instrumental activities of daily living (IADLs), plus measures of caregiving characteristics and caregiver's health., Results: Overall, 56% of caregivers reported strain. We detected an interaction where strain was very common (>82%) among caregivers who helped with four or more IADLs, regardless of WM grades, and among caregivers with the worst WM grades (WM grades ≥4), regardless of the number of IADLs they helped with. Among caregivers helping with fewer than four IADLs, having WM grade 4 or greater was associated with a 55% higher prevalence ratio for reporting strain. This association remained statistically significant but was most markedly attenuated by adjustments for: care recipient's memory and behavioral problems, caregiver's depression symptoms, and caregiver's ADL impairment., Conclusions: Caregiving strain is very common among older informal caregivers who provide help with many IADLs, and among caregivers who help with fewer IADLs, but have manifest signs of white matter pathology. Modern quantitative-neuroimaging studies are needed to evaluate whether more subtle variability in brain structure confers caregiving strain and the related health consequences., (Copyright © 2017 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Objectives: To examine caregiver factors associated with unmet needs for care of older adults., Design: Population-based surveys of caregivers and older adult care recipients in the United States in 2011., Setting: 2011 National Health and Aging Trends Study and National Study of Caregiving., Participants: Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366)., Measurements: Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects., Results: Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P < .001)., Conclusion: Unmet ADL needs are prevalent among older adults with family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them., (© 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.)

Background: Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM., Methods: Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment)., Results: A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001)., Conclusions: To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society., (© 2016 American Cancer Society.)

Objectives: Despite the increasing number of lesbian and gay older adults, research geared towards health and well-being of this population is limited. Many lesbian and gay seniors experience health disparities and are at risk for poor health outcomes. The aims of this study were to gather in-depth information on the concerns of lesbian and gay elders with respect to aging and care needs., Method: The sample included 124 gay men and lesbian women aged 50+ years. Data were gathered via focus groups and questionnaires. The focus groups addressed: (1) concerns about aging in the LGBT community, (2) barriers to needed support and services, (3) concerns about caregiving and (4) needed programs for lesbian and gay seniors., Results: Concerns expressed about aging included: lack of financial security, lack of family or social support, fears about the lack of someone to provide needed care, and discrimination in healthcare or service communities. Participants also indicated concerns about being alone and vulnerable and a need for resources and support programs, specifically for lesbian and gay older adults and for lesbian and gay caregivers., Conclusions: These findings suggest needed areas of support and programs for older gay men and lesbian women. They also suggest that healthcare professionals might need more training regarding the particular needs and concerns of this community.

Purpose of the Study: We report the results of a study designed to assess whether and how much informal caregivers are willing to pay for technologies designed to help monitor and support care recipients (CRs) in performing kitchen and personal care tasks., Design and Methods: We carried out a web survey of a national sample of adult caregivers (age 18-64) caring for an older adult (N = 512). Respondents completed a 25min online survey that included questions about their caregiving situation, current use of everyday technology, use of specific caregiving technologies, general attitudes toward technology, and questions about technologies designed to help them monitor and provide assistance for CRs' kitchen and self-care activities., Results: About 20% of caregivers were not willing to pay anything for kitchen and self-care technologies. Among those willing to pay something, the mean amount was approximately $50 per month for monitoring technologies and $70 per month for technologies that both monitored and provided some assistance. Younger caregivers, those caring for a person with Alzheimer's disease, and caregivers with more positive attitudes toward and experience with technology were willing to pay more. Most caregivers feel that the government or private insurance should help pay for these technologies., Implications: Caregivers are receptive and willing to pay for technologies that help them care for their CR, although the amount they are willing to pay is capped at around $70 per month. The combination of private pay and government subsidy may facilitate development and dissemination of caregiver technologies., (© The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose of This Study: To characterize illness perceptions among persons with mild cognitive impairment (PWMCI) and their family care partners, and to examine whether PWMCI's and their family care partners' illness perceptions were associated with their own, as well as the other member of the dyad's, emotional reactions to MCI., Design and Methods: This cross-sectional study of PWMCI and their family care partners (n = 60 dyads) used patient and relative versions of the Revised Illness Perception Questionnaire (IPQ-R) to assess metacognitive and emotional features of illness perception in MCI along 5 dimensions of perceived: seriousness of potential consequences, personal controllability, timeline, fluctuation (cycling) of symptoms, and illness coherence (clear vs. confusing)., Results: As compared to family members, PWMCI perceived MCI to be less potentially serious and to be more within their personal control, but dyads otherwise shared similar perceptions of MCI. Among PWMCI, perceived seriousness of the potential consequences of MCI was the only dimension to be significantly correlated with emotional distress. For family members, increased MCI-related emotional distress was significantly associated with perceptions of MCI as potentially serious, permanent, or confusing. A dyadic analysis using APIM showed that MCI-related emotional distress, in both PWMCI and family members, was linked to the PWMCI's perception of the seriousness of MCI., Implications: MCI-related education and support should be tailored for both the PWMCI and family member audiences, while acknowledging interdependence of illness perceptions within family units. Tailored information and support will be critical in managing MCI going forward, as illness perceptions are likely key factors on which individuals will plan for the future or base medical decisions., (© The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.

Background: The aim of this study was to examine the efficacy of a collaborative care intervention in reducing depression, pain, and fatigue and improve quality of life., Methods: A total of 261 patients with advanced cancer and 179 family caregivers were randomized to a web-based collaborative care intervention or enhanced usual care. The intervention included the following: 1) a web site with written and audiovisual self-management strategies, a bulletin board, and other resources; 2) visits with a care coordinator during a physician's appointment every 2 months; and 3) telephone follow-up every 2 weeks. Primary patient outcomes included measures of depression, pain, fatigue, and health-related quality of life. Secondary outcomes included Interleukin (IL)-1α, IL-1β, IL-6, and IL-8 levels, Natural Killer (NK) cell numbers, and caregiver stress and depression., Results: At the baseline, 51% of the patients reported 1 or more symptoms in the clinical range. For patients who presented with clinical levels of symptoms and were randomized to the intervention, reductions in depression (Cohen's d = 0.71), pain (Cohen's d = 0.62), and fatigue (Cohen's d = 0.26) and improvements in quality of life (Cohen's d = 0.99) were observed when compared to those in the enhanced usual car arm at 6 months. Reductions in IL-6 (φ = 0.18), IL-1β (φ = 0.35), IL-1α (φ = 0.19), and IL-8 (φ = 0.15) and increases in NK cell numbers (φ = 0.23) were observed in comparison with enhanced usual care arm at 6 months. Reductions in caregiver stress (Cohen's d = 0.75) and depression (Cohen's d = 0.37) were observed at 6 months for caregivers whose loved ones were randomized to the intervention arm., Conclusions: The integration of screening and symptom management into cancer care is recommended., (© 2016 American Cancer Society.)

Background: The perception of suffering causes distress. Little is known about what predicts the perception of suffering in caregivers., Objective: The aims of this study were to determine the predictors of caregivers' perceptions of the suffering of patients with a primary malignant brain tumor and to find to what extent perceived suffering predicts the caregivers' burden and depression., Methods: Data were obtained as part of a descriptive longitudinal study of adult family caregivers of persons with a primary malignant brain tumor. Recruitment took place in outpatient neuro-oncology and neurosurgery clinics. Caregiver perception of care recipient suffering was measured by 1 item on a scale from 1 to 6., Results: The sample of caregiver interviews 4 months after recipients were diagnosed consisted of 86 dyads. While controlling for age, years of education, tumor type, being a spousal caregiver, spiritual well-being, and anxiety, perception of overall suffering was predicted by such symptoms as difficulty understanding, difficulty remembering, difficulty concentrating, feeling of distress, weakness, and pain. Caregivers' perception of the patient's degree of suffering was the main predictor of caregiver burden due to schedule 4 months following diagnosis., Conclusions: Care recipient symptoms play an important role in caregivers' perception of the care recipients' suffering. Perception of care recipient suffering may influence caregiver burden., Implications for Practice: Identifying specific predictors of overall suffering provides meaningful information for healthcare providers in the field of neuro-oncology and neurosurgery.

Objectives: Spousal caregivers of patients with dementia are in need of interventions to bolster their quality of life. Computer-based, self-administered cognitive training is an innovative approach to target spousal caregiver distress and coping. We tested the feasibility of administering one such intervention with minimal clinician intervention., Methods: Twenty-seven elderly adults (>64 years old), who each were the primary caregiver for a spouse with dementia, were recruited through the Memory Disorders Clinic of the Alzheimer Disease Research Center in Pittsburgh, PA. Spousal caregivers were instructed to use a handheld computer version of the Adaptive Paced Visual Serial Attention Task (APVSAT) at least three times per week for four weeks as part of a larger caregiver intervention trial (P01 AG020677). Feasibility was explored by examining the frequency of APVSAT usage., Results: Results suggest that self-directed cognitive training is feasible for spousal caregivers of dementia patients. The mean usage of the APVSAT was 42 (SD = 28.58). Performance increased from the beginning to the end of the trial, and usage was not affected by stress, worry, or poor sleep quality., Conclusion: Findings suggest the potential utility of cognitive training via handheld computer for spousal caregivers of dementia patients to improve problem solving, coping and adaptation, planning, and persevering with goal-directed tasks.

Purpose of the Study: To examine whether compassionate love in both individuals with Alzheimer's disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers., Design and Methods: Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms., Results: As hypothesized, both AD individuals' and caregivers' compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers' compassionate love mediated the association between AD individuals' compassionate love and caregivers' burden as well as the association between AD individuals' compassionate love and caregivers' positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers' compassionate love and less caregiver depressive symptoms., Implications: Results suggest that AD individuals' compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers' and AD individuals' feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners' compassionate love may benefit caregivers., (© The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: Caring for a spouse with dementia is a source of chronic stress and is associated with a heightened prevalence of self-reported sleep problems. Styles and strategies for coping with stress have been associated with objective measures of sleep in non-caregiver populations. The current study evaluated relationships between caregiver coping style and sleep disturbance using in-home polysomnography., Methods: Sixty spousal caregivers (mean [standard deviation] age = 73.31 [7.05] years; 81.7% female) completed the Brief Cope, the Hamilton Rating Scale for Depression, and three nights of in-home polysomnography. Participants were categorized into two groups based on the presence or absence of clinically significant low sleep efficiency (<80%). A factor analysis of the Brief Cope yielded higher-order factors that included approach coping and avoidant coping (explained variance, 27.2% and 16.9%, respectively). Coping factors were entered into a binary logistic regression predicting sleep efficiency group while controlling for sleep apnea, medication use, and depression, as measured by the Hamilton Rating Scale for Depression., Results: In fully adjusted models, for each unit increase on the avoidant coping factor, participants were 3.4 times more likely to be classified in the low sleep efficiency group (B = 1.224, χ2(1) = 4.967, p = .026, exp(B) = 3.401, 95% confidence interval = 1.159-9.981). Approach coping was unrelated to sleep efficiency in both adjusted and unadjusted models., Conclusions: These findings highlight the importance of coping among caregivers and indicate that avoidant coping may be a modifiable predictor of sleep disturbance in conditions of chronic stress.

Introduction: Many informal caregivers of dependent midlife and older adults suffer from their own functional limitations. The impact of caregiver functional limitations on care recipient receipt of preventive services is unknown. The purpose of this study is to examine the association between caregiver functional limitations and decreased access to recommended preventive services in dependent care recipients., Methods: Dependent adults (those receiving assistance with activities of daily living or instrumental activities of daily living) and their primary informal caregiver were identified from pooled alternate years (2000-2008) of the nationally representative Medical Expenditure Panel Survey (data analyzed February-October 2014). The impact of caregiver limitations (cognitive, mobility, sensory, emotional health) on care recipient's receipt of up to seven different preventive services was assessed via survey-weighted linear and logistic regression., Results: Of the 5-year weighted estimate of 14.2 million caregiver-care recipient dyads, 38.0% of caregivers reported at least one functional limitation. The percentage of recommended preventive services received by care recipients was significantly lower if the caregiver had cognitive, mobility, or emotional health limitations. Each type of caregiver functional limitation was negatively associated with at least four different preventive services., Conclusions: Informal caregivers burdened by their own functional impairments may face challenges in facilitating access to preventive care in dependent midlife and older adults. Policies and interventions designed to prevent or mitigate the impact of caregiver functional impairments are critical to the success of community-based models of care for dependent adults., (Copyright © 2015 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: This study examined the effectiveness of a translated version of Resources for Enhancing Alzheimer's Caregiver Health (REACH) II in Hong Kong's service delivery context., Method: The localized intervention was adapted from REACH II with 12 individual-based sessions, which addressed multiple domains including disease education, safety, caregiver (CG) well-being, and care recipients' problem behavior. Two-hundred and one dementia family dyads completed the intervention., Results: The efficacy of the intervention was demonstrated by the significant improvement in the perception of positive aspects of caregiving, reduction in depressive symptoms, subjective burden, bother and caregiving risks among CGs, and abatement in behavioral problems among care recipients. Treatment implementation was reflected from the high rate of adoption of each intervention component by interventionists and satisfactory reception from CGs. Promises in reach and adoption were demonstrated by the participation of 85 interventionists from 11 NGOs across 18 districts and CGs of a variety of demographic characteristics., Discussion: This study is the first attempt to translate a highly successful evidence-based dementia CG intervention developed in the USA into the Hong Kong service delivery context. The current results echoed the success of REACH II. The values and challenges of translational research are discussed., (Copyright © 2014 John Wiley & Sons, Ltd.)

Background: Preparedness for death as a predictor of post-bereavement adjustment has not been studied prospectively. Little is known about pre-death factors associated with feeling prepared prior to the death of a loved one., Objective: Our aim was to prospectively assess the role of preparedness for death as a predictor of post-bereavement adjustment in informal caregivers (CGs) who experienced the death of their loved one and to identify predictors and correlates of complicated grief, depression, and preparedness for death among informal CGs., Methods: We conducted a prospective, longitudinal study using data collected for a randomized trial testing the efficacy of an intervention for CGs of recently placed care recipients (CRs). Subjects were 217 informal CGs of care recipients recently placed in nursing homes, and they were followed for 18 months. CGs were assessed in person by certified interviewers at 6-month intervals. Eighty-nine CGs experienced the death of their loved one in the course of the study. Measurements used included preparedness for death, advance care planning (ACP), complicated grief, depression, and sociodemographic characteristics., Results: CGs who reported feeling more prepared for the death experienced lower levels of complicated grief post-bereavement. A multivariate ordinal logistic regression model showed that spouses as opposed to adult child CGs were less prepared for the death, depressed CGs were less prepared, and patients who engaged in ACP had CGs who felt more prepared. CR overt expressions about wanting to die was also related to higher levels of preparedness in the CG., Conclusions: We show prospectively that preparedness for death facilitates post-bereavement adjustment and identify factors associated with preparedness. ACP can be an effective means for preparing informal CGs for the death of their CRs.

Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.

Purpose: Quality of Life technology (QoLT) stresses humans and technology as mutually dependent and aware, working together to improve task performance and quality of life. This study examines preferences for technology versus human assistance and control in the context of QoLT., Method: Data are from a nationally representative, cross-sectional web-based sample of 416 US baby boomers (45-64) and 114 older adults (65+) on preferences for technology versus human assistance and control in the performance of kitchen and personal care tasks. Multinomial logistic regression and ordinary least squares regression were used to determine predictors of these preferences., Results: Respondents were generally accepting of technology assistance but wanted to maintain control over its' operation. Baby boomers were more likely to prefer technology than older adults, and those with fewer QoLT privacy concerns and who thought they were more likely to need future help were more likely to prefer technology over human assistance and more willing to relinquish control to technology., Conclusions: Results suggest the need for design of person- and context-aware QoLT systems that are responsive to user desires for level of control over operation of the technology. The predictors of these preferences suggest potentially receptive markets for the targeting of QoLT systems.

Context: Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention., Objectives: To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤ 2 weeks, two- and four-months post-ICU discharge., Methods: Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution)., Results: Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued., Conclusion: In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization., (Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: This study examined the attribution of mild cognitive impairment (MCI) etiology assigned by individuals with MCI and their care partners, and the extent to which the dyads agreed on the attribution of MCI etiology., Methods: We conducted secondary analyses of cross-sectional data from a cohort of individuals with MCI (n = 60) and their care partners (n = 60). The mean age of the individuals with MCI was 71.0 ± 9.4 years and of care partners 64.2 ± 11.0 years. The primary outcome was attribution assigned to memory deficits on the Illness Perception Questionnaire. We categorized the attribution of MCI etiology as either potentially controllable or uncontrollable factors. We described the distribution of MCI etiology with descriptive and contingency tables. We determined the odds of a patient or care partner choosing one type of MCI etiology over another., Results: Although individuals with MCI and their care partners most frequently attributed MCI to uncontrollable factors (81.7% and 61.0%, respectively), care partners were 28.41 (95% CI, 1.26 to 645.48) times more likely to attribute MCI etiology to potentially controllable factors than individuals with MCI. No significant associations between demographic factors and attribution of MCI etiology were found for the individuals with MCI or the care partners., Conclusion: Findings demonstrated that members of the dyad attributed MCI etiology to different causes. Attributions of MCI etiology should be explored by professionals to clarify misconceptions and potentially improve subsequent voluntary actions intended to assist oneself or others., (Copyright © 2013 John Wiley & Sons, Ltd.)

Background/objectives: Available services and intervention programs for dementia caregivers are often underutilized because of issues such as cost, logistics, lack of knowledge about available services, or insufficient support from others. Information technologies offer the potential of removing these barriers and facilitating the ability of caregivers to access needed support. This project evaluated the feasibility and efficacy of technology-based psychosocial intervention among minority family caregivers of dementia patients., Design: A feasibility and efficacy trial., Setting: Participants' homes in the Greater Miami Community., Participants: One hundred ten (56 Hispanic American and 54 African American) caregivers of patients with dementia., Intervention: A technology-based multi-component psychosocial intervention was delivered in-home and via videophone technology over 5 months. The intervention was modeled after the REACH II intervention and targeted known areas of caregiver risk., Measurement: Standardized measures of depression, caregiver burden, social support, and the caregivers' perception of the caregiver's experience were administered at baseline and 5 months post-randomization., Results: Overall, caregivers who received the intervention reported a decrease in burden, an increase in perceived social support and positive perceptions of the caregiving experience. No effect was observed for depression. Most participants indicated that the intervention improved their caregiving skills and found the technology to be easy to use., Conclusions: A technology-based format was feasible for delivering a multi-component intervention to minority family dementia caregivers. The intervention improved caregiver outcomes for both Hispanic and African American caregivers. The results suggest that technology may help eliminate disparities in access to caregiver intervention programs., (Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Background: Informal care provided by family members is an essential feature of health care systems worldwide. Although caregiving often begins early in the disease process, over time informal caregivers must deal with chronic, debilitating, and life-threatening illnesses. Despite thousands of published studies on informal care, little is known about the intersection of informal caregiving and formal palliative care., Objective: The goal of this review is to identify research priorities that would enhance our understanding of the relationship between informal caregiving and palliative care., Design: To better understand palliative care in the context of caregiving, we provide an overview of the nature of a caregiving career from inception to care recipient placement and death and the associated tasks, challenges, and health effects at each stage of a caregiving career. This in turn leads to key unanswered questions designed to advance research in caregiving and palliative care., Results: Little is known about the extent to which and how palliative care uniquely affects the caregiving experience. This suggests a need for more fine-grained prospective studies that attempt to clearly delineate the experience of caregivers during palliative and end-of-life phases, characterize the transitions into and out of these phases from both informal and formal caregiver perspectives, identify caregiver needs at each phase, and identify effects on key caregiver and patient outcomes., Conclusions: Inasmuch as most caregivers must deal with chronic, debilitating, and often life-threatening conditions, it is essential that we advance a research agenda that addresses the interplay between informal care and formal palliative care.

Background and Objective: Even though cancer is the second most common cause of death, little is known about the extent to which family caregivers find meaning and benefit in the loss, and associated demographic characteristics and caregiving experiences. This study addressed this gap in our knowledge., Design and Subjects: Family caregivers participated in a nationwide survey for cancer caregivers two years after the relative's diagnosis (T1). Of those, 121 were identified as bereaved by five years postdiagnosis (T2) and provided valid data for the study variables. Participants were primarily middle-aged, spouse of the deceased, and bereaved for an average of 2.9 years., Measurements: Perceived caregiving stress, caregiver esteem, and patient's cancer severity as indicators of initial caregiving stressors and caregivers' demographics were measured at T1. Social support and time since bereavement as indicators of current resources and benefit finding in bereavement as an outcome were measured at T2., Results: Reports of personal growth from bereavement emerged in multiple domains, although some caregivers were less likely to find benefit: nonspousal caregivers who had greater caregiving stress and spousal caregivers with lack of social support., Conclusions: Findings suggest that bereavement programs designed to help bereaved caregivers find meaning in the loss should be personalized reflecting individual differences in caregiving stress and caregiver esteem. Such programs should also be tailored differently for spousal versus nonspousal caregivers.

Objective: The objective of this study was to examine the role of social support in predicting depression in caregivers of adults aging with spinal cord injuries., Design: Cross-sectional secondary data analyses were conducted for this study., Setting: Participants were recruited from multiple community locations in Pittsburgh, PA and Miami, FL., Subjects: Community-dwelling caregivers of aging adults with spinal cord injuries (N = 173) were interviewed as part of a multisite randomized controlled trial., Main Measures: The Center for Epidemiological Studies Depression Scale measured caregiver depression symptom levels. A hierarchical multiple regression analysis examined the effect of social support (social integration, received social support, and negative social interactions) on depressive symptom levels for the caregivers of adults aging with spinal cord injuries, controlling for demographic characteristics, and caregiving characteristics., Results: Caregivers were, on average, 53 years old (SD = 15) and care-recipients were 55 years old (SD = 13). Average Center for Epidemiological Studies Depression Scale scores indicated that 69 (40%) of caregivers had significant depressive symptoms (mean 8.69, SD = 5.5). Negative social interactions (β = 0.27, P< 0.01) and social integration ( β = -0.25, P< 0.01) were significant independent predictors of depressive symptom levels in caregivers of adults aging with spinal cord injuries., Conclusions: Findings demonstrate that negative social interactions and social integration are associated with the burden in caregivers of adults aging with spinal cord injuries. Negative social interactions and social integration should be investigated in assessments and interventions intended to target caregiver depressive symptom levels.