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Resources for Enhancing Alzheimer's Caregiver Health, 1996-2001 (ICPSR 3253)

Released/updated on: 2006-03-30
Geographic coverage: United States, Tennessee, California, Alabama, Florida, Birmingham, Pennsylvania, Miami, Palo Alto, Massachusetts, Memphis, Philadelphia, Boston
Time period: 1996-09-01--2001-02-01
Resources for Enhancing Alzheimer's Caregiver Health (REACH) was established in 1995 to conduct social and behavioral research on interventions designed to enhance family caregiving, particularly in minority families, for persons with Alzheimer's Disease and related disorders. Data were collected through randomized clinical trials at six sites: University of Alabama--Birmingham, the Research and Training Institute of the Hebrew Rehabilitation Center for Aged in Boston, University of Tennessee--Memphis, University of Miami, Veterans Affairs Palo Alto Health Care System and Stanford University, and Thomas Jefferson University in Philadelphia. Interventions studied included psychoeducational support groups, behavioral skills training programs, family-based systems interventions, environmental modifications, and technological computer-based information and communication services. Although interventions varied by site, all sites collected the same data at the same time intervals. The impact of the various intervention strategies on psychological distress, health status, health practices, and health care utilization was assessed. Parts 1 through 5 contain screening data and a short mental status questionnaire. Parts 6 through 24 contain baseline data and cover activities of daily living, anxiety, and caregiver health and behaviors along with sociodemographic information. Also included are care recipient medications and sociodemographic information. Parts 25 and 26 contain tracking data and also include an examination of interventions.
Curated

Resources for Enhancing Alzheimer's Caregiver Health, 1996-2001, Baseline and Follow-Up Data (ICPSR 3678)

Released/updated on: 2006-09-26
Geographic coverage: United States, Tennessee, California, Alabama, Florida, Birmingham, Pennsylvania, Miami, Palo Alto, Massachusetts, Memphis, Philadelphia, Boston
Time period: 1996-09-01--2001-02-01
Resources for Enhancing Alzheimer's Caregiver Health (REACH) was established in 1995 to conduct social and behavioral research on interventions designed to enhance family caregiving, particularly in minority families, for persons with Alzheimer's Disease and related disorders. Baseline data (ICPSR 3253) were collected through randomized clinical trials at six sites: University of Alabama-Birmingham, The Research and Training Institute of the Hebrew Rehabilitation Center for Aged in Boston, University of Tennessee-Memphis, University of Miami, Veterans Affairs Palo Alto Health Care System and Stanford University, and Thomas Jefferson University in Philadelphia. Interventions such as psychoeducational support groups, behavioral skills training programs, family-based systems interventions, environmental modifications, and technological computer-based information and communication services varied by site. This collection contains baseline data along with follow-up data at 6-, 12-, and 18-month intervals from each site with focus on the impact of the various intervention strategies on psychological distress, health status, health practices, and health care utilization. Also included are follow-up batteries, transition batteries (placement, bereavement, discontinued), and data reporting missed visits. Parts 1 through 5 contain screening data and responses to a short mental status questionnaire. Parts 6 through 34 contain baseline data along with follow-up data at 6, 12, and 18-month intervals and cover activities of daily living, anxiety, and caregiver health and health behaviors along with sociodemographic information. Also included are care recipient medications and sociodemographic information. Parts 35 through 40 contain tracking data and also include an examination of interventions.
Curated
Restricted

Study of Dementia in Swedish Twins, 1990-1999 (ICPSR 25963)

Released/updated on: 2010-06-04
Geographic coverage: Sweden, Global
Time period: 1990-05-01--1999-03-01
The Study of Dementia in Swedish Twins was designed to study the relative influence of genetic and environmental factors for Alzheimer's disease and other types of dementia and to test the role of specific environmental exposures that might constitute risk or protective factors for dementia. The first seven years of the Study of Dementia in Swedish Twins was based on the population from the SWEDISH ADOPTION/TWIN STUDY OF AGING (SATSA), 1984, 1987, 1990, and 1993 (ICPSR 3843). SATSA consists of a subset of 3,838 same-sex twins from the population-based Swedish Twin Registry; however, the baseline sample for the Study of Dementia in Swedish Twins consists of 2,394 individuals who were alive and born in 1935 or earlier. The Study of Dementia in Swedish Twins data cover background information (sex, zygosity, rearing status, ages at each data collection point, age at death), cognitive screening (which took place in conjunction with each SATSA wave of data collection), clinical dementia diagnoses for those who received a complete dementia workup (both baseline and longitudinal), cognitive test results (both baseline and longitudinal), medical history and medical risk factors (medical examination; blood pressure; laboratory results; history of neurologic, coronary, mental, and other diseases; smell test; history of head injury, anaesthesia, fevers, medications, dietary history with respect to fish, raw meat, and acidic foods prepared in aluminum pans), residential, occupational, and leisure activities history (including exposure related to welding, hairdressing, agriculture, medical settings, painting and other sources of organic solvents, crystal, carbon monoxide, radiation, raw meat and game; participation in contact sports; antiperspirant containing aluminum; history of smoking; history of use of alcohol), family history of dementia, and APOE genotype. SATSA is archived separately at ICPSR, see ICPSR 3843. The SATSA and the Study of Dementia in Swedish Twins files contain a common ID number that can be used to create a crosswalk between the files.
Curated

Wisconsin Longitudinal Study, 1957-2022 (ICPSR 6163)

Released/updated on: 2006-04-06
Geographic coverage: United States, Wisconsin
Time period: 1957-01-01--2022-01-01

The Wisconsin Longitudinal Study (WLS) is a long-term study of a random sample of 10,317 men and women who graduated from Wisconsin high schools in 1957. The WLS provides an opportunity to study the life course, intergenerational transfers and relationships, family functioning, physical and mental health and well-being, and morbidity and mortality from late adolescence through 2025. WLS data also cover social background, youthful aspirations, schooling, military service, labor market experiences, family characteristics and events, social participation, psychological characteristics and retirement.

Survey data were collected from the original respondents (the graduates) in 1957, 1964, 1975, 1992, 2004, 2011, 2020 and 2022; from their parents in 1957 and 1964; from a selected sibling in 1977, 1994, 2005, 2011, 2020 and 2022; from the spouse of the original respondent in 2004; and from the spouse of the selected sibling in 2006.

The collection of cognitive function data among graduates and siblings under the ILIAD study (MPIS: Sanjay Asthana, Michal Engelman, and Pamela Herd) began in 2020 to measure risk and resilience of Alzheimer's disease and related dementia (ADRD) as the cohort reaches their 80s. Data from 2020 and 2022 have been released, and 2025 and 2027 wave releases are forthcoming.

The WLS also has extensive administrative linkages, including with the 1940 and 1950 census, Social Security records, voting participation, and Medicare claims data.