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The Black Rural and Urban Caregivers Mental Health/Functioning data collection includes survey data collected in 2000-2002 from African American females age 65 and older, who provide unpaid care for older African American adults in the St. Louis Metropolitan area and seven rural Missouri counties (Butler, Dunklin, Mississippi, New Madrid, Pemiscot, Scott, and Stoddard).

Because of inadequate recruitment knowledge about rural African American caregivers and persistent reports of challenges when involving African Americans elders in research, this study focused on the involvement of African American rural elders and recruitment of their female informal caregivers in a study of caregivers' well-being and service use. African Americans comprise the largest group of ethnic and racial minority elders aged 65 and older in the U.S. population thus making up one half of all ethnic and racial minority elders. Numerical changes in population size and increasing longevity of older African Americans direct attention to African American informal female caregivers- persons most likely to assist African American elderly with daily living tasks, personal needs, and long-term care. More disabled and chronically ill African American elders portend continuing need from informal or unpaid caregivers for dependent care.

There are two datasets associated with this study, a public-use (da36349-0001) and restricted-use (da36349-0002) version of the same survey data. Both data files contain 521 cases and 1438 variables. However, the restricted file contains continuous as opposed to categorical values for age variables rounded to the nearest whole number.

Over the past two decades, as the proportion of older Americans has increased, so too have instances of elder abuse, including physical, emotional, and sexual abuse; financial exploitation; and caregiver neglect. The most recent national survey estimates show at least 1 in 10 community-residing older adults experience elder abuse each year, which translates to over 7 million Americans annually. Rates of abuse are magnified for older adults with the least financial and social resources, including those with low incomes, living in isolated rural communities, and facing structural barriers such as systemic racism. Emerging research on the COVID-19 pandemic prompts even greater concern for elder abuse: the virus has disproportionately affected older adults, resulting in increased social isolation, physical health impairment, and exposure to COVID-related fraud.

Recognizing the urgent need to develop and rigorously evaluate programs aimed at preventing elder abuse, the US Department of Justice's National Institute of Justice funded a demonstration from 2017 to 2021 during which researchers from the Urban Institute and practitioners at the Phoenix-based Area Agency on Aging, Region One ("the Area Agency") co-developed an elder abuse prevention program in Maricopa County, Arizona, which Urban's team then evaluated through a randomized controlled pilot study. This multiphase demonstration included an initial planning phase and a subsequent pilot study, which is the focus of this report.

The EMPOWER: Building Late-Life Resilience program is a 12-week in-home intervention, with one-hour weekly visits designed to empower community-residing older adults with the resiliency and resources to lead safe and healthy lives throughout the aging process. EMPOWER provides one-on-one assessments, client-centered prevention education, and needs-responsive life skills training embedded in a series of cognitive reframing conversations with an experienced facilitator. The program has eight modules, each of which culminates in an action plan focused on strengthening a client's internal assets and identifying sources of positive social support. Caseworkers facilitate motivational discussions centered on clients' self-identified goals and action planning, with the aim of optimizing clients' home safety, physical health, social connectedness, and emotional and financial well-being.

The Hispanic EPESE provides data on risk factors for mortality and morbidity in Mexican Americans in order to contrast how these factors operate differently in non-Hispanic White Americans, African Americans, and other major ethnic groups.

The Wave 7 dataset comprises the sixth follow-up of the baseline Hispanic EPESE (HISPANIC ESTABLISHED POPULATIONS FOR THE EPIDEMIOLOGIC STUDIES OF THE ELDERLY, 1993-1994: [ARIZONA, CALIFORNIA, COLORADO, NEW MEXICO, AND TEXAS] [ICPSR 2851]). The baseline Hispanic EPESE collected data on a representative sample of community-dwelling Mexican Americans, aged 65 years and older, residing in the five southwestern states of Arizona, California, Colorado, New Mexico, and Texas.

The public-use data cover demographic characteristics (age, sex, type of Hispanic race, income, education, marital status, number of children, employment, and religion), height, weight, social and physical functioning, chronic conditions, related health problems, health habits, self-reported use of dental, hospital, and nursing home services, and depression. Subsequent follow-ups provide a cross-sectional examination of the predictors of mortality, changes in health outcomes, and institutionalization, and other changes in living arrangements, as well as changes in life situations and quality of life issues.

During this 7th Wave (dataset 1), 2010-2011, re-interviews were conducted either in person or by proxy, with 659 of the original respondents. This Wave also includes 419 re-interviews from the additional sample of Mexican Americans aged 75 years and over with higher average-levels of education than those of the surviving cohort who were added in Wave 5, increasing the total number of respondents to 1,078.

The Wave 7 Informant Interviews dataset (dataset 2) includes data which corresponds to the sixth follow-up of the baseline Hispanic EPESE Wave 7 and included re-interviews with 1,078 Mexican Americans aged 80 years and older. During these interviews, participants were asked to provide the name and contact information of the person they are "closer to" or they "depend on the most for help." These INFORMANTS were contacted and interviewed regarding the health, function, social situation, finances, and general well-being of the ongoing Hispanic EPESE respondents. Information was also collected on the informant's health, function, and caregiver responsibilities and burden. This dataset includes information from 925 informants, more than two-thirds of whom were children of the respective respondents.

The Longitudinal Study of Generations (LSOG), initiated in 1971, began as a survey of intergenerational relations among 300 three-generation California families with grandparents (then in their sixties), middle-aged parents (then in their early forties), and grandchildren (then aged 15 to 26). The study broadened in 1991 and now includes a fourth generation, the great-grandchildren of these same families.

The LSOG, with a fully elaborated generation-sequential design, allows comparisons of sets of aging parents and children at the same stage of life but during different historical periods. These comparisons make possible the investigation of the effects of social change on inter-generational solidarity or conflict across 35 years and four generations, as well as the effects of social change on the ability of families to buffer stressful life transitions (e.g., aging, divorce and remarriage, higher female labor force participation, changes in work and the economy, and possible weakening of family norms of obligation), and the effects of social change on the transmission of values, resources, and behaviors across generations.

The LSOG contains information on family structure, household composition, affectual solidarity and conflict, values, attitudes, behaviors, role importance, marital relationships, health and fitness, mental health and well-being, caregiving, leisure activities, and life events and concerns. Demographic variables include age, sex, income, employment status, marital status, socioeconomic history, education, religion, ethnicity, and military service.

The codebook for dataset 1 (DS1 Waves 1-7) is over 5000 pages long; due to complications related to the size of this document, the search function within the PDF is not yet enabled. Users seeking specific variables should use the search function within the PI Codebook, or search using the variables search tab/option from the study page.

In 1995-1996, the MacArthur Midlife Research Network carried out a national survey of over 7,000 Americans aged 25 to 74 [ICPSR 2760]. The purpose of the study was to investigate the role of behavioral, psychological, and social factors in understanding age-related differences in physical and mental health. The study was innovative for its broad scientific scope, its diverse samples (which included siblings of the main sample respondents and a national sample of twin pairs), and its creative use of in-depth assessments in key areas (e.g. daily diary of stressful experiences [ICPSR 3725] and cognitive functioning [ICPSR 3596]) on a subset of participants. A detailed description of the study and findings generated by it are available at: http://www.midus.wisc.edu

With support from the National Institute on Aging, a follow-up of the original Midlife Development in the United States (MIDUS) sample was conducted in 2004 (MIDUS 2 [ICPSR 4652]). The daily stress and cognitive functioning projects were repeated and expanded at MIDUS 2; in addition the protocol was expanded to include biomarkers and neuroscience.

In 2013 a third wave (MIDUS 3) of survey data was collected on longitudinal participants. Data collection for this follow-up wave largely repeated baseline assessments (e.g., phone interview and extensive self-administered questionnaire), with additional questions in selected areas such as economic recession experiences. Cognitive functioning data were also collected at the same time, while data collection for the daily diary, biomarker, and neuroscience projects commenced in 2017.

MIDUS also maintains a Colectica portal, which allows users to interact with variables across waves and create customized subsets. Registration is required.

The MIDUS Refresher Daily Diary Project (aka National Study of Daily Experiences or NSDE) contains data from 782 respondents. The purpose of the Daily Stress Project was to examine how sociodemographic factors, health status, personality characteristics, and genetic endowment modify patterns of change in exposure to day-to-day life stressors as well as physical and emotional reactivity to these stressors.

The primary aims were:

1. To describe how the links between multiple aspects of daily stressors (e.g., frequency, content, severity) and daily physical and emotional well-being change over ten years during adulthood;
2. To examine how sociodemographic factors and personality characteristics influence change in both exposure to as well as changes in physical and emotional reactivity to daily stressors;
3. To investigate how exposure and reactivity to daily stressors correlate with physiological indicators of physical health and predict changes in global health reports; and
4. To explore the relative genetic and environmental influences mediating change in exposure and physical and emotional reactivity to daily stressors throughout adulthood.

The Daily Diary study is comprised of a subsample of the MIDUS (Midlife in the United States) Refresher, a national survey of nearly 3,600 Americans (aged 25 to 75) conducted during 2011-2014. The MIDUS Refresher survey was designed to replenish the original MIDUS 1 baseline cohort and allow the examination of period effects on health (mental and physical) related to the economic recession by comparing the pre-recession MIDUS 1 sample with the post-recession MIDUS Refresher sample. Guiding hypotheses, at the most general level, were that behavioral and psychosocial factors are consequential for health (physical and mental).

Demographic variables in this collection include sex and age.

The National Health and Aging Trends Study (NHATS) began in 2011 and fosters research to guide efforts to reduce disability, maximize health and independent functioning, and enhance quality of life at older ages. NHATS aims to provide the basis for understanding trends in late-life functioning, how these differ for various population subgroups, and the economic and social consequences of aging and disability for individuals, families, and society.

NHATS gathers information on a nationally representative sample of Medicare beneficiaries ages 65 and older. The sample is refreshed periodically so that researchers may study national-level disability trends as well as individual trajectories. Annual, in-person interviews collect detailed information on the disablement process and its consequences.

The NHATS interview is guided by a conceptual framework that recognizes physical and cognitive capacity is distinct from the environment in which activities take place. Among the specific content areas included are: the physical, social, technological and service environment, physical and cognitive capacity, use of assistive devices and rehabilitation, help received with daily activities (self-care, household, and medical), participation in valued activities, and wellbeing. A last month of life interview focuses on quality of end of life care. Periodically caregivers of NHATS respondents are interviewed in the supplemental National Study of Caregiving (NSOC). Linkages to Medicare records are also available.

Content was developed by a multidisciplinary team of researchers from the fields of demography, geriatric medicine, epidemiology, health services research, economics, and gerontology. NHATS is being led by the Johns Hopkins University Bloomberg School of Public Health in collaboration with the University of Michigan, with data collection by Westat, and support from the National Institute on Aging.

The National Long-Term Care Survey (NLTCS) has completed six waves, nominally at five-year intervals, 1982, 1984, 1989, 1994, 1999, and 2004. The NLTCS is a nationally-representative sample both of the community and of institutionalized populations and is longitudinal in that sample persons join the survey once they reach 65 years of age and stay in the survey until they either die or are lost to follow-up. At each wave, a screener questionnaire is administered to the sample which divides the sample into three parts: the non-disabled (frequently called screen-outs), the disabled but living in the community, and the disabled living in an institution. About 5,000 people die between waves and are replaced by a sample of about that size of people who have become age 65 since the prior wave. Because of budget considerations it usually has not been possible to continue the entire non-disabled sample into the next wave. Instead a sample of the non-disabled is drawn to keep the total sample size for a wave at about 20,000. One of the interesting and useful features of the NLTCS is that data are collected on help that the sample person receives from informal caregivers.

The NLTCS is a very data-rich resource with many components, including disability measures, medical conditions, attained education levels, and income. Numerous papers have used it as a source of data addressing a wide variety of topics related to aging and disability.

Ancillary surveys have been added to measure other characteristics of the 65 and older population, to include a Caregiver Survey to acquire data on informal caregivers themselves (done in 1989, 1999, and 2004) and Next-of-Kin (NOK) surveys administered to sample persons who had died between 1982 and 1984 and again between 1994 and 1999. The sample has been frequently supplemented to compensate for low representation in some survey components, in particular the 75 years and older and 95 years and older components. In 1999 physical specimens were drawn from a sample of persons who responded to the survey. These physical specimens (blood where possible, alternatively a buccal wash) are subject to a genetic analysis and, in the case of blood, to a panel of proteins believed to be particularly important to health.

NLTCS Survey Data

Survey data are available in ASCII and SAS format.

The Analytic Data File, a file of derived variables for all waves of the survey incorporates correction factors and consistency checking. The Analytic Data File covers all waves of the survey and is available in both ASCII and SAS formats. Final versions of data for all waves, up to and including 1999 and a beta version for 2004, have been released and are supported by documentation.