Caregivers provide a critical source of care for people living with disabilities and chronic conditions. They improve health outcomes among care recipients while risking negative health consequences themselves. Nevertheless, the need for more caregivers is substantial. Therefore, caregiving is a public health concern. Public health seeks to improve the health of populations in an equitable way. This chapter illustrates a public health approach to supporting caregivers of people with dementia using the Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia, the 2018–2023 Road Map. It is framed using essential public health services and identifies 25 strategies for public health action to support caregivers. The Road Map could serve as a template for supporting caregivers more broadly. Addressing the anticipated family care gap requires that public health systems collaborate to collect data and equitably implement evidence-based policies and programs that support people providing care in their communities.

Introduction: Caregiving, providing regular care or assistance to family members or friends with health problems or disabilities, may affect caregivers' sleep. This study examined self-reported short sleep duration by caregiving status among US adults. Methods: Data of 114,496 respondents aged >= 18 years in 19 states, the District of Columbia, and Puerto Rico from the 2016 Behavioral Risk Factor Surveillance System were analyzed. Prevalence of short sleep duration (<7 hours per 24-hour period) by caregiving status was calculated, and adjusted prevalence ratios (PRs) and 95% confidence intervals (CIs) were derived from a multivariable logistic regression model with adjustment for potential covariates. Results: Nearly 1 of 5 adults reported caregiving within the past month. A higher prevalence of short sleep duration was reported among caregivers (39.5%) than among non-caregivers (34.2%, adjusted PR [95% CI] = 1.12 [1.06-1.19]). Caregivers who reported prolonged caregiving (>= 5 years) reported a higher prevalence of short sleep duration than those with <2 years of caregiving. Similarly, caregivers who provided 20-39 hours of caregiving per week reported a higher prevalence of short sleep duration than those with <20 hours caregiving per week. Conclusions: Caregivers had a higher prevalence of short sleep duration than noncaregivers. Providing information and community-based resources and supports for caregiving may minimize caregiver stress and improve sleep particularly for those with prolonged or more intense caregiving. (C) 2020 Published by Elsevier Inc. on behalf of National Sleep Foundation.

In 2015, an estimated 17.7 million U.S. persons were informal caregivers who provided substantial services through in-home, unpaid assistance to their family members and friends (1). Caregiving can have many benefits, such as enhancing the bond between caregiver and recipient, but it can also place an emotional and physical strain on caregivers, leading to higher rates of depression, lower quality of life, and poorer overall health (2). As the U.S. population continues to age (3), the need for informal caregivers will likely increase. However, little nationally representative information on prevalence of caregivers is available. This study examined demographic characteristics and health status of informal caregivers from 44 states,* the District of Columbia (DC), and Puerto Rico, based on data from the Behavioral Risk Factor Surveillance System (BRFSS) collected during 2015-2017. Overall, approximately one in five adults reported that they had provided care to a family member or friend in the preceding 30 days. Fifty-eight percent of caregivers were women, and a majority were non-Hispanic white, with at least some college education, and married or living with a partner. Across all states, 19.2% of caregivers reported being in fair or poor health, although significant state-to-state variation occurred. Caregivers provide important support to family members, friends, and the health care system and might compromise their own health to provide this support (1,2). Better understanding of caregivers and the challenges they face could inform implementation of improvements in support systems that could enhance not only the health of the caregiver, but that of the care recipient as well. For example, additional data regarding demographics at the state level might aid in more effective planning and support of caregivers with evidence-based programs and assistance (https://www.cdc.gov/aging/publications/features/caring-for-yourself.html).

Abstract The Healthy Brain Initiative: National Public Health Road Map to Maintaining Cognitive Health (2007) called on the research community to more widely disseminate its work on cognitive aging and cognitive health. However, communication beyond individual disciplines is complex. We identified terminology that social scientists use to describe cognitive aging and cognitive health among older adults, demonstrated how such terms are defined, and illustrated how these constructs are being measured. We searched terms such as Alzheimer* and dementia in studies between 2007 and 2018 (n=209). Geriatrics (n=95), neurology (n=81), psychiatry (n=65), and psychology (n=30) were most common disciplines; however, there was no consistency in how terms were used within and across disciplines. A detailed review of “cognitive impairment” and “mild cognitive impairment” demonstrated that formal definitions were provided infrequently and measurement of constructs ranged widely. The variability in terminology, definitions and measures reflects a need for greater specificity in research communication.

Abstract As the U.S. population ages, caregiving has emerged as an important public health issue affecting an increasing proportion of American families. In 2015, an estimated 17.7 million people provided assistance to family members and friends. Although caregiving can have positive aspects, many studies have found that caregivers report more health difficulties than non-caregivers. The importance of population-based information is central to public health’s ability to respond effectively to this growing public health problem. The Alzheimer’s Disease and Healthy Aging Program at the Centers for Disease Control and Prevention (CDC) has made surveillance of caregivers a priority area. To this end, the development and use of a caregiving module for the Behavioral Risk Factor Surveillance System (BRFSS) was undertaken. The BRFSS is one of the largest telephone-based health surveillance system in the world, and collects information from the public across a broad range of health topics. This platform therefore provides a unique opportunity to capture health status data from caregivers as well as the option of comparing caregivers to non-caregivers. The Caregiver Module consists of 9 questions that address the characteristics of care and the type of assistance provided. The objective of this symposium is to describe the development of the current caregiving module (Dr. Bouldin), present relevant findings from the previous three years of surveillance data (Drs. Edwards and Taylor), and to discuss future directions for caregiver surveillance and CDC-developed resources to facilitate date utilization (Dr. McGuire). The discussant will describe the impact and status of national-level surveillance data

Abstract Informal caregivers can provide assistance that can help family members and friends live in the community longer but can place caregivers at increased risk for poorer health outcomes. Subjective cognitive decline (SCD) is the self-reported experience of worsening or more frequent confusion or memory loss. The objective of this study is to describe SCD in caregivers. Data were analyzed from 21 states, Puerto Rico, and District of Columbia who administered both the Caregiver and Cognitive Decline modules of the Behavioral Risk Factor Surveillance System in the same year for 2015–2017. A higher proportion of caregivers reported SCD (13.4%) compared to non-caregivers (10.2%). Of those who did need assistance with daily activities due to SCD, 1 in 8 non-caregivers were unable to the necessary assistance compared to 1 in 4 caregivers. SCD among caregivers is of particular concern because it affects both the caregiver and care recipient.

Abstract As caregiving is becoming a leading public health issue, we used the BRFSS to better understand who caregivers are as well as features of their caregiving experience. We combined BRFSS data from three years (2015-2017) to examine demographic characteristics including gender, race, age, education, employment, and marital status. Slightly more than one in five BRFSS respondents (20.7%) were caregivers. The majority were women, had at least some college, were employed, and married or living with a partner. Most caregivers were under 45 years old, but a substantial proportion (20.7%) were 65 years or older. There was significant state variation by every demographic characteristic. These data underscore that caregiving is a common feature of U.S. family life, and caregivers’ concerns should be considered in healthcare, employment, and service provision. Important state-level variations uncovered by use of the BRFSS Caregiving Module could lead to better targeting of caregiver support programs.

PURPOSE:To assess whether financial or health-related barriers were more common among rural caregivers and whether rural caregivers experienced more caregiving-related difficulties than their urban peers. METHODS:We used data from 7,436 respondents to the Caregiver Module in 10 states from the 2011-2013 Behavioral Risk Factor Surveillance System. Respondents were classified as caregivers if they reported providing care to a family member or friend because of a long-term illness or disability. We classified respondents as living in a rural area if they lived outside of a Metropolitan Statistical Area (MSA). We defined a financial barrier as having an annual household income <$25,000 or not being able see a doctor when needed in the past year because of cost. We defined a health barrier as having multiple chronic health conditions, a disability, or fair or poor self-rated health. FINDINGS:Rural caregivers more frequently had financial barriers than urban caregivers (38.1% vs 31.0%, P = .0001), but the prevalence of health barriers was similar (43.3% vs 40.6%, P = .18). After adjusting for demographic differences, financial barriers remained more common among rural caregivers. Rural caregivers were less likely than their urban peers to report that caregiving created any difficulty in both unadjusted and adjusted models (adjusted prevalence ratio = 0.90; P < .001). CONCLUSIONS:Informal caregivers, particularly in rural areas, face financial barriers. Rural caregivers were less likely than urban caregivers to report caregiving-related difficulties. Rural caregivers' coping strategies or skills in identifying informal supports may explain this difference, but additional research is needed to explore this hypothesis.

With the graying of the U.S. population, there has been an increased recognition in public health to promote healthy aging and address major problems afflicting older Americans. The Centers for Disease Control and Prevention (CDC) has established the Healthy Aging Program (HAP) to serve as the focal point for cross-cutting public health action. Housed in the CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), Program staff work with a variety of partners to increase the reach of their programs and broaden dissemination of their efforts. For over 10 years the HAP has used the Healthy Brain Initiative as its guide for prioritizing activities. Based upon the public health model, this document enumerates a variety of activities designed to increase awareness of and support for cognitive health. Although this is a new area for public health, great strides have been made in infusing cognitive health into public health programs. This symposium will report on the activities of CDC’s HAP. Dr. McGuire will give an introduction to the Healthy Brain Initiative and explain how it serves as a guide for the CDC and state public health agencies. Dr. Taylor will discuss the new data portal for information about aging, and its potential to become a resource for researchers and policy makers. Dr. Edwards will describe surveillance efforts via modules administered via the Behavioral Risk Factor Surveillance Survey (BRFSS). Finally, Ms. French of the Alzheimer’s Association will present examples of CDC’s partnership activities and their impact on the community.

OBJECTIVE:Early diagnosis of Alzheimer's disease (AD) or dementia is important so that patients can express treatment preferences, subsequently allowing caregivers to make decisions consistent with their wishes. This study explored the relationship between people's concern about developing AD/dementia, likelihood to be screened/tested, if experiencing changes in cognitive status or functioning, and concerns about sharing the diagnostic information with others. METHOD:A descriptive study was conducted using Porter Novelli's SummerStyles 2013 online survey data. Of the 6105 panelists aged 18+ who received the survey, 4033 adults responded (response rate: 66%). Chi squares were used with case-level weighting applied. RESULTS:Almost 13% of respondents reported being very worried or worried about getting AD/dementia, with women more worried than men (p<.001), and AD/dementia caregivers more worried than other types of caregivers (p=.04). Women were also more likely than men to agree to be screened/tested if experiencing changes in memory and/or thinking (p<.001). The greater the worry, the more likely respondents would agree to be screened/tested (p<.001). Nearly 66% of respondents were concerned that sharing a diagnosis would change the way others think/feel about them, with women reporting greater concern than men (p=.003). CONCLUSION:Findings demonstrate that level of worry about AD/dementia is associated with the reported likelihood that individuals agree to be screened/tested. This information will be useful in developing communication strategies to address public concern about AD/dementia that may increase the likelihood of screening and early detection.

One priority action in “The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013–2018” is surveillance of cognitive health issues. CDC’s Healthy Aging Program (HAP) has developed and promulgated the use of two modules, on subjective cognitive decline and caregiving, in the Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS is the world’s largest ongoing telephone health-related survey, collecting data in 50 states and three U.S. territories. The HAP enlisted the help of subject matter experts and used cognitive testing to refine and improve these modules. State-level data from the modules have been used to inform state Alzheimer’s plan development and implementation, and to create awareness and education about cognitive decline and caregiving through webinars, proclamations, and media events. These data can further the understanding of the public health burden, inform public health policy and strategies, and monitor quality of life for all Americans.

This study uses data from the 2009 Behavioral Risk Factors Surveillance System (BRFSS) to examine differences between male and female caregivers by demographics, health-related quality of life (HRQOL), and the effect of social support on HRQOL. Roughly two-thirds of caregivers were women, and demographic characteristics differed among men and women caregivers. Women caregivers reported significantly more mentally and physically unhealthy days than men, but there were no differences between men and women in general health or life satisfaction. Men were significantly more likely to report that they rarely or never received social support. Despite this, the effect of social support on HRQOL was stronger in men than in women. Implications of these findings for caregiver support programs are discussed.

Objective: This study determined whether county-level social determinants of health and adverse childhood experiences (ACE) were associated with emotional support and health-related quality of life (HRQOL) in adulthood. This study represents the largest population-based investigation on ACE to include county-level indicators of the social ecology. Method: We used data from the 2009 Behavioral Risk Factor Surveillance System (BRFSS) survey (29,212 adults from 5 states) and the American Community Survey (2010; 304 counties). Multilevel structural equation models were employed to test direct and indirect associations between county-level social determinants of health, ACEs and indicators of adult HRQOL. Results: At the individual level, ACEs were associated with lower emotional support, and lower emotional support was associated with worse physical and mental HRQOL. Parental divorce was associated with better mental HRQOL for individuals who reported >= 2 forms of childhood maltreatment and/or negative household environments during childhood. At the county-level, low median income and high county-level unemployment were associated with low emotional support, and high median income and high unemployment were directly associated with poor physical and mental HRQOL. Conclusion: Findings from this study suggest that intervention efforts designed to promote positive emotional supports for adults who have experienced ACEs, particularly for those living in disadvantaged counties, may ameliorate potential health consequences during adulthood.

To provide information about the effects of increased confusion or memory loss (ICML) in households in the United States, we describe primary respondents' reports (proxy reports) about another person in their household experiencing ICML, using 2011 Behavioral Risk Factor Surveillance System (BRFSS) data. We used proxy reports on type of assistance needed, effects on functioning in daily activities, and whether confusion or memory was discussed with a health care professional, stratifying by age of the household member with ICML (18-50 y vs >= 65 y). About 3% (n = 3,075 households) of primary respondents reported living with a household member with ICML; 75% of these household members needed some type of assistance, and nearly 60% had discussed ICML with a health care professional. Collecting proxy data about individuals in households may help paint a clearer picture of the characteristics of those experiencing cognitive decline and the potential needs of individuals and families.

We examined the demographic and health characteristics of people aged 45 years or older in 21 states with self-reported increased confusion or memory loss (ICML) (n = 10,583) by whether or not they also reported functional difficulties related to ICML. We used data from the 2011 Behavioral Risk Factor Surveillance System optional module on impact of cognitive impairment. After adjusting for demographic differences, we found that respondents with ICML and functional difficulties were significantly more likely than those with ICML and no functional difficulties to report frequent poor physical health, frequent poor mental health, limited activity due to poor physical or mental health, and a need for more help. Further understanding of the implications for long-term services and supports is needed.

Using data from the 2011 Behavioral Risk Factor Surveillance System (BRFSS), we examined households in 13 states (N = 81,012) in which the respondent or another adult household member experienced increased confusion or memory loss (ICML) in the preceding 12 months. A total of 12.6% of households reported at least 1 adult who experienced ICML, and in 5.4% of households all adults experienced ICML. Based on these results, an estimated 4 million households in these 13 states have a member with ICML, potentially affecting more than 10 million people. This study can inform public health communication campaigns aimed at increasing awareness of the signs and symptoms of cognitive decline and augment community planning efforts so that the needs of households in which 1 or more adults has cognitive decline are considered.

OBJECTIVE The purpose of the current investigation is to assess and validate the factor structure of the Behavioral Risk Factor Surveillance System's (BRFSS) Adverse Childhood Experience (ACE) module. METHOD ACE data available from the 2009 BRFSS survey were fit using exploratory factor analysis (EFA) to estimate an initial factorial structure. The exploratory solution was then validated using confirmatory factor analysis (CFA) with data from the 2010 BRFSS survey. Lastly, ACE factors were tested for measurement invariance using multiple group factor analysis. RESULTS EFA results suggested that a 3-factor solution adequately fit the data. Examination of factor loadings and item content suggested the factors represented the following construct areas: Household Dysfunction, Emotional/Physical Abuse, and Sexual Abuse. Subsequent CFA results confirmed the 3-factor solution and provided preliminary support for estimation of an overall latent ACE score summarizing the responses to all available items. Measurement invariance was supported across both gender and age. CONCLUSIONS Results of this study provides support for the use of the current ACE module scoring algorithm, which uses the sum of the number of items endorsed to estimate exposure. However, the results also suggest potential benefits to estimating 3 separate composite scores to estimate the specific effects of exposure to Household Dysfunction, Emotional/Physical Abuse, and Sexual Abuse.

Our study assesses the relationships between self-reported adverse childhood experiences (ACEs) (including sexual, physical, or verbal abuse, along with household dysfunction including parental separation or divorce, domestic violence, mental illness, substance abuse, or incarcerated household member) and unemployment status in five US states in 2009.

We examined the characteristics of adults providing regular care or assistance to friends or family members who have health problems, long-term illnesses, or disabilities (ie, caregivers). We used data from the 2009 Behavioral Risk Factor Surveillance System (BRFSS) to examine caregiver characteristics, by age and caregiving status, and compare these characteristics with those of noncaregivers. Approximately 24.7% (95% confidence interval, 24.4%-25.0%) of respondents were caregivers. Compared with younger caregivers, older caregivers reported more fair or poor health and physical distress but more satisfaction with life and lower mental distress. Understanding the characteristics of caregivers can help enhance strategies that support their role in providing long-term care.