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Objective: Despite cross-sectional evidence that persons living with dementia receive disproportionate hours of care, studies of how care intensity progresses over time and differs for those living with and without dementia have been lacking., Method: We used the 2011-2018 National Health and Aging Trends Study to estimate growth mixture models to identify incident care hour trajectories ("classes") among older adults (N = 1,780)., Results: We identified 4 incident care hour classes: "Low, stable," "High, increasing," "24/7 then high, stable," and "Low then resolved." The high-intensity classes had the highest proportions of care recipients with dementia and accounted for nearly half of that group. Older adults with dementia were 3-4 times as likely as other older adults to experience one of the 2 high-intensity trajectories. A substantial proportion of the 4 in 10 older adults with dementia who were predicted to be in the "Low, stable" class lived in residential care settings., Discussion: Information on how family caregiving is likely to evolve over time in terms of care hours may help older adults with and without dementia, the family members, friends, and paid individuals who care for them, as well as their health care providers assess and plan for future care needs., (© The Author(s) 2021. 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.)

Background/objectives: Hospitalization is common among older adults with disability, many of whom receive help from a caregiver and have dementia. Our objective was to evaluate the association between caregiver factors and risk of hospitalization and whether associations differ by dementia status., Design: Longitudinal observational study., Setting: The 1999 and 2004 National Long-Term Care Survey and the 2011 and 2015 National Health and Aging Trends Study, linked caregiver surveys, and Medicare claims., Participants: A total of 2,589 community-living Medicare fee-for-service beneficiaries, aged 65 years or older (mean age = 79 years; 63% women; 31% with dementia), with self-care or mobility disability and their primary family or unpaid caregiver., Measurements: Self-reported characteristics of older adults and their caregivers were assessed from older adult and caregiver survey interviews. Older adult hospitalization over the subsequent 12 months was identified in Medicare claims. Multivariable Cox proportional hazards models adjusted for older adult characteristics and were stratified by dementia status., Results: In this nationally representative cohort, 38% of older adults with disabilities were hospitalized over 12 months following interview. Increased hospitalization risk was associated with having a primary caregiver who helped with healthcare tasks (adjusted hazard ratio (aHR) = 1.22; 95% confidence interval (CI) = 1.05-1.40), reported physical strain (aHR = 1.21; 95% CI = 1.04-1.42), and provided more than 40 hours of care weekly (aHR = 1.26; 95% CI = 1.04-1.54 vs ≤20 hours). Having a caregiver who had helped for 4 years or longer (vs <1 year) was associated with 38% lower risk of hospitalization (aHR = 0.62; 95% CI = 0.49-0.79). Older adults with and without dementia had similar rates of hospitalization (39.5% vs 37.3%; P = .4), and caregiving factors were similarly associated with hospitalization regardless of older adults' dementia status., Conclusion: Select caregiving characteristics are associated with hospitalization risk among older adults with disability. Hospitalization risk reduction strategies may benefit from understanding and addressing caregiving circumstances., (© 2020 The American Geriatrics Society.)

Background and Objectives: Racial disparities in health and socioeconomic characteristics of older adults have implications for the experiences of their family and unpaid caregivers, but knowledge to date has primarily drawn from convenience samples. Using a population-based sample, we examine associations between caregiver race and caregiving-related effects., Research Design and Methods: Study participants include white (n = 992) and black (n = 556) respondents to the 2015 National Study of Caregiving who assisted community-dwelling older adults with disabilities who participated in the National Health and Aging Trends Study. Guided by Pearlin's Stress Process Model, hierarchical logistic regression models were constructed to examine race differences in caregiving-related effects after adjusting for caregiving context, stressors, and resources., Results: Relative to white caregivers, blacks more often provided in excess of 40 hr of care per week (54.3% vs 38.6%) and more often cared for an older adult with dementia (27.1% vs 20.7%) who was living below the federal poverty line (31.7% vs 11.9%) or was Medicaid-eligible (42.2% vs 11.8%). Black caregivers more often used supportive services (32.9% vs 24.8%). In fully adjusted regression models, black caregivers were more likely to report gains and less likely to report emotional difficulty than whites. Service utilization did not attenuate caregiving-related emotional difficulty or participation restrictions, regardless of race., Discussion and Implications: Findings highlight caregiving disparities and counterintuitive differences in experiences and indicate the importance of identifying supports such as paid family leave and faith and community-based programming to better support community-dwelling low-income older adults and their family and unpaid caregivers., (© The Author(s) 2020. 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: We provide national estimates of caregiving networks for older adults with and without dementia and examine how these networks develop over time. Most prior research has focused on primary caregivers and rarely on change over time., Method: We identify a cohort of older adults continuously followed in the National Health and Aging Trends Study between 2011 and 2015 and receiving help from family members or unpaid caregivers in 2015 (n = 1,288). We examine differences by dementia status in network size, types of assistance and task sharing, and composition-differentiating between "specialist" and "generalist" caregivers helping in one versus multiple activity domains. Multinomial regression is used to estimate change over time in network task sharing and composition., Results: In 2015, older adults with dementia had larger caregiving networks involving more task sharing than those without dementia and more often relied on generalist caregivers, especially the subset assisting with medical, household, and mobility or self-care activities. Uniformly greater reliance over time on these more intensely engaged generalist caregivers chiefly accounts for larger dementia networks., Discussion: Findings lend support to the need for caregiver training on managing multiple task domains and-for dementia caregivers in particular-task-sharing skills. More generally, the design of new approaches to better support older adults and their caregivers should consider the complexity, heterogeneity, and change over time in caregiving networks., (© 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.)

Importance: Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations., Objective: To examine caregivers' experiences with older adults' health care workers., Design, Setting, and Participants: This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019., Exposures: Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults' health care workers., Main Outcomes and Measures: Caregiver-reported experiences when interacting with older adults' health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults' care., Results: Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults' health care workers in the prior year. Most caregivers who interacted with older adults' health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults' treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults' care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults' health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%) (P = .007)., Conclusions and Relevance: These findings reinforce the need for strategies to better support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations.

Background: Older adults with disability are frequent users of the emergency department (ED) and often rely on family caregiver support. We identify whether and which caregiver characteristics are associated with older adults' ED use. Methods: We use Cox proportional hazards regression to model the likelihood of all-cause ED use (defined as 1 or more visits within 12 months of survey) as a function of caregiver characteristics after adjusting for older adult sociodemographic and health characteristics. We draw from linked older adult and caregiver surveys and administrative claims, creating a sample of 2521 community-living older adults with mobility/self-care disability receiving care from a family or unpaid caregiver. Results: About half (52.5%) of older adults receiving mobility or self-care help incurred 1 or more ED visits within 12 months of interview. Adjusting for year of data collection, sociodemographic characteristics, and health status, these older adults were at greater risk of all-cause ED use if their primary caregiver provided greater than 40 hours of care per week (hazard ratio [HR] 1.22, 95% CI 1.04-1.43; P = .02), helped with health care tasks (HR 1.26; 95% CI 1.08-1.46; P < .01), or experienced physical strain (HR 1.18; 95% CI 1.03-1.36; P = .02). Conclusion: Caregiver strain, helping with health care tasks, and greater hours of help per week are associated with heightened risk of ED use among older adults receiving mobility or self-care help. Study findings suggest the potential benefit of caregiver assessment and support.

Purpose of Study: To assess trends in family caregiving between 1999 and 2015., Design and Methods: We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined., Results: Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999., Implications: Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.

Objectives: To comprehensively examine factors associated with long-term nursing home (NH) entry from 6 domains of older adult and family caregiver risk from nationally representative surveys and develop a prognostic model and a simple scoring system for use in risk stratification., Design: Retrospective observational study., Setting: National Long-Term Care Surveys 1999 and 2004 and National Health and Aging Trends Study 2011 and linked caregiver surveys., Participants: Community-living older adults receiving help with self-care disability and their primary family or unpaid caregiver (N=2,676)., Measurements: Prediction of long-term NH entry (>100 days or ending in death) by 24 months follow up, ascertained from Minimum Data Set assessments and dates of death from Medicare enrollment files. Risk factors were measured from survey responses., Results: In total, 16.1% of older adults entered a NH. Our final model and risk scoring system includes 7 independent risk factors: older adult age (1 point/5 years), living alone (5 points), dementia (3 points), 3 or more of 6 self-care activities (2 points), caregiver age (45-64: 1 point, 65-74: 2 points, ≥75: 4 points), caregiver help with money management (2 points), and caregiver report of moderate (2 points) or high (4 points) strain. Using this model, participants were assigned to risk quintiles. Long-term NH entry was 7.0% in the lowest quintile (0-6 points), 20.4% in the middle 3 quintiles (7-14 points), and 30.9% in the highest quintile (15-22 points). The model was well calibrated and demonstrated moderate discrimination (c-statistic=0.670 in the original data, c-statistic=0.647 in bootstrapped samples, c-statistic=0.652 using the point-scoring system)., Conclusion: We developed a prognostic model and simple scoring system that may be used to stratify risk of long-term NH entry of community-living older adults. Our model may be useful for population health and policy applications., (© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.)

Importance: Family and unpaid caregivers commonly help older adults who are at high risk for poorly coordinated care., Objective: To examine how caregivers' involvement in older adults' health care activities relates to caregiving responsibilities, supportive services use, and caregiving-related effects., Design, Setting, and Participants: A total of 1739 family and unpaid caregivers of 1171 community-dwelling older adults with disabilities who participated in the 2011 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC)., Main Outcomes and Measures: Caregiving-related effects, including emotional, physical, and financial difficulty; participation restrictions in valued activities; and work productivity loss., Exposures: Caregivers assisting older adults who provide substantial, some, or no help with health care, defined by coordinating care and managing medications (help with both, either, or neither activity, respectively)., Results: Based on NHATS and NSOC responses from 1739 family and unpaid caregivers of 1171 older adults with disabilities, weighted estimates were produced that accounted for the sampling designs of each survey. From these weighted estimates, 14.7 million caregivers assisting 7.7 million older adults, 6.5 million (44.1%) provided substantial help, 4.4 million (29.8%) provided some help, and 3.8 million (26.1%) provided no help with health care. Almost half (45.5%) of the caregivers providing substantial help with health care assisted an older adult with dementia. Caregivers providing substantial help with health care provided more hours of assistance per week than caregivers providing some or no help (28.1 vs 15.1 and 8.3 hours, P < .001 for both). The use of supportive services was low but was greater among caregivers providing substantial vs some or no help (26.7% vs 15.5% and 7.6%, P < .001 for both). In multivariable regression models adjusting for older adults' function and caregivers' sociodemographic and health characteristics, caregivers providing substantial help with health care were significantly more likely to experience emotional difficulty (adjusted odds ratio [aOR], 1.79; 95% CI, 1.20-2.66), physical difficulty (aOR, 2.03; 95% CI, 1.39-2.97), and financial difficulty (aOR, 2.21; 95% CI, 1.52-3.22) than caregivers providing no help. Compared with caregivers providing no help with health care activities, caregivers providing substantial help with health care activities were more than 5 times as likely to experience participation restrictions in valued activities (aOR, 5.32; 95% CI, 3.31-8.59) and more than 3 times as likely to experience work productivity loss (aOR, 3.14; 95% CI, 1.40-7.02)., Conclusions and Relevance: Family caregivers providing substantial assistance with health care experience significant emotional difficulty and role-related effects, yet only one-quarter use supportive services.

The number of US adults ages sixty-five and older who are living with dementia is substantial and expected to grow, raising concerns about the demands that will be placed on family members and other unpaid caregivers. We used data from the 2011 National Health and Aging Trends Study and its companion study, the National Study of Caregiving, to investigate the role of dementia in caregiving. We found that among family and unpaid caregivers to older noninstitutionalized adults, one-third of caregivers, and 41 percent of the hours of help they provide, help people with dementia, who account for about 10 percent of older noninstitutionalized adults. Among older adults who receive help, the vast majority in both community and residential care settings other than nursing homes rely on family or unpaid caregivers (more than 90 percent and more than 80 percent, respectively), regardless of their dementia status. Caregiving is most intense, however, to older adults with dementia in community settings and from caregivers who are spouses or daughters or who live with the care recipient., (Project HOPE—The People-to-People Health Foundation, Inc.)

Objectives: To propose a theoretical construct of family caregiver skills in effective medication management for home hospice patients., Methods: Semistructured face-to-face interviews were conducted with 22 hospice providers (14 nurses, 4 physicians, and 4 social workers) and 23 family caregivers (10 daughters, 4 wives, 2 husbands, and 7 others) of elderly patients (>or=60 years old) who were receiving home services from four hospice care programs in the Chicago metropolitan area., Results: Although both groups identified similar skill sets, hospice providers emphasized technical skills such as administering medications, and family caregivers valued management skills such as organizing medications, coordinating with hired caregivers, and providing care to patients who resisted treatment. We defined effective medication management in hospice as caregivers' ability to effectively relieve symptoms with pharmacological interventions by successfully utilizing skills related to teamwork (coordinate with hospice providers and with other family or hired caregivers), organization (acquire, store, track, and discard medications), symptom knowledge (recognize and interpret common symptoms), medication knowledge (understand the basics of pharmacology and medication administration), and personhood (understand and respond to the patient's needs)., Discussion: The proposed construct of medication management skills in hospice will help guide future development of training interventions and clinical assessment tools.

Background: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking., Methods: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months., Results: An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role., Conclusions: End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.

Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time., Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time., Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement., Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.

Background and Aims: It is reasonable to surmise that informal caregivers might influence access and use of health services among disabled older adults, although this relationship has not been well studied. The objective of this research was to examine caregiver attributes with respect to recipients' hospitalization experiences., Methods: Generalized estimating equations were used to generate population-average logistic regression models for the risk of incurring inpatient hospitalization or being delayed in discharge from hospital. Data come from a sample of 420 women aged 65 or older receiving informal care, who participated in both the Women's Health and Aging Study and its accompanying Caregiving Survey., Results: Individuals whose primary caregivers were characterized by feelings of competence in their role were 40% more likely to experience an inpatient hospitalization (p<0.05) but 48% less likely to be delayed in discharge from the hospital (p<0.05). Measures related to caregiver overload and personal gain were not found to be related to the likelihood of either incurring an inpatient admission or being delayed in hospital discharge, although individuals whose primary caregivers were characterized by role captivity (a measure related to perceived burden) were more than twice as likely to be delayed in discharge from the hospital (p<0.05) without controlling for other characteristics (p<0.10 in the multivariate model). Individuals whose primary caregivers reported being involved with recipients' medical professionals were 50% more likely to incur an inpatient hospitalization (p<0.01)., Conclusion: These findings suggest that primary caregiver attributes have relevance to recipients' hospitalization experiences.

Objectives: Studies of caregivers illustrate a classic sampling dilemma: maximizing recruitment without compromising study validity. Because caregivers are defined in relation to a care recipient, sampling methods are often determined by pragmatic decisions such as access, efficiency, and costs. However, overlooking validity may result in selection bias, misclassification of caregiver status, and the confounding of results. Validity and pragmatic concerns were compared in four caregiver studies that used different sampling frames: community based, Alzheimer's disease registry, and ancillary studies to existing epidemiologic studies., Methods: Systematic comparison of validity and of pragmatic aspects of sampling frames, recruitment methods, and participation rates, with attention to caregiver identification, inclusion criteria, and sample restriction., Results: All studies used task-based inclusion criteria. Caregiver participation rates ranged from 81% to 96%, with higher rates in community-based and registry-based studies than in ancillary studies. The latter studies benefited from unbiased selection of noncaregivers., Discussion: Regardless of sampling frame, standard task-based inclusion criteria to define caregivers may enhance validity.

Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications:In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years. (Contains 6 tables.)

Reports on a study which focused on the factors relating to why people with primary responsibility for providing care to activities of daily living (ADL)-impaired persons ended their caregiving roles. Sources of data used; What the variables of the study reflect.

A correction to the article "Change OverTime in Caregiving Networks for Older Adults With and Without Dementia," by Brenda C. Spillman, Vicki A. Freedman, Judith D. Kasper, and Jennifer L. Wolff, which was published in a 2019 issue of the journal is presented.