Characteristics and Health Status of Informal Unpaid Caregivers - 44 States, District of Columbia, and Puerto Rico, 2015-2017.

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).

Mental health differences between men and women caregivers, BRFSS 2009.

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.

Proxy reports about household members with increased confusion or memory loss, 2011 Behavioral Risk Factor Surveillance System.

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.

Increased confusion and memory loss in households, 2011 Behavioral Risk Factor Surveillance System.

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.

Demographic and health status differences among people aged 45 or older with and without functional difficulties related to increased confusion or memory loss, 2011 Behavioral Risk Factor Surveillance System.

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.

Adverse childhood experiences and frequent insufficient sleep in 5 U.S. States, 2009: a retrospective cohort study.

BACKGROUND: Although adverse childhood experiences (ACEs) have previously been demonstrated to be adversely associated with a variety of health outcomes in adulthood, their specific association with sleep among adults has not been examined. To better address this issue, this study examines the relationship between eight self-reported ACEs and frequent insufficient sleep among community-dwelling adults residing in 5 U.S. states in 2009. METHODS: To assess whether ACEs were associated with frequent insufficient sleep (respondent did not get sufficient rest or sleep ≥ 14 days in past 30 days) in adulthood, we analyzed ACE data collected in the 2009 Behavioral Risk Factor Surveillance System, a random-digit-dialed telephone survey in Arkansas, Louisiana, New Mexico, Tennessee, and Washington. ACEs included physical abuse, sexual abuse, verbal abuse, household mental illness, incarcerated household members, household substance abuse, parental separation/divorce, and witnessing domestic violence before age 18. Smoking status and frequent mental distress (FMD) (≥ 14 days in past 30 days when self-perceived mental health was not good) were assessed as potential mediators in multivariate logistic regression analyses of frequent insufficient sleep by ACEs adjusted for race/ethnicity, gender, education, and body mass index. RESULTS: Overall, 28.8% of 25,810 respondents reported frequent insufficient sleep, 18.8% were current smokers, 10.8% reported frequent mental distress, 59.5% percent reported ≥ 1 ACE, and 8.7% reported ≥ 5 ACEs. Each ACE was associated with frequent insufficient sleep in multivariate analyses. Odds of frequent insufficient sleep were 2.5 (95% CI, 2.1-3.1) times higher in persons with ≥ 5 ACEs compared to those with no ACEs. Most relationships were modestly attenuated by smoking and FMD, but remained significant. CONCLUSIONS: Childhood exposures to eight indicators of child maltreatment and household dysfunction were significantly associated with frequent insufficient sleep during adulthood in this population. ACEs could be potential indicators promoting further investigation of sleep insufficiency, along with consideration of FMD and smoking.

Relationship between adverse childhood experiences and unemployment among adults from five U.S. states.

PURPOSE: 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. METHODS: We examined these relationships using the 2009 Behavioral Risk Factor surveillance system survey data from 17,469 respondents (aged 18-64 years) who resided in five states, completed the ACE Questionnaire, and provided socio-demographic and social support information. We also assessed the mediation of these relationships by respondents' educational attainment, marital status, and social support. RESULTS: About two-third of respondents reported having had at least one ACEs, while 15.1% of men and 19.3% of women reported having had ≥4 ACEs. Among both men and women, the unemployment rate in 2009 was significantly higher among those who reported having had any ACE than among those who reported no ACEs (p < 0.05). Educational attainment, marital status, and social support mediated the relationship between ACEs and unemployment, particularly among women. CONCLUSIONS: ACEs appear to be associated with increased risk for unemployment among men and women. Further studies may be needed to better understand how education, marital status, and social support mediate the association between multiple ACEs and unemployment.

Adult caregivers in the United States: characteristics and differences in well-being, by caregiver age and caregiving status.

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.

Adverse childhood experiences and smoking status in five states.

OBJECTIVE: Our objective was to examine the associations between adverse childhood experiences (ACEs) and smoking behavior among a random sample of adults living in five U.S. states. METHODS: We used data from 25,809 participants of the 2009 Behavioral Risk Factor Surveillance System to assess the relationship of each of the 8 adverse childhood experiences and the adverse childhood experience score to smoking status. RESULTS AND CONCLUSIONS: Some 59.4% of men and women reported at least one adverse childhood experience. Each of the eight adverse childhood experiences measures was significantly associated with smoking status after adjustment for demographic variables. The prevalence ratios for current and ever smoking increased in a positive graded fashion as the adverse childhood experience score increased. Among adults who reported no adverse childhood experiences, 13.0% were currently smoking and 38.3% had ever smoked. Compared to participants with an adverse childhood experience score of 0, those with an adverse childhood experience score of 5 or more were more likely to be a current smoker (adjusted prevalence ratio (aPR): 2.22, 95% confidence interval [CI]: 1.92-2.57) and to have ever smoked (aPR: 1.80, 95% CI: 1.67-1.93). Further research is warranted to determine whether the prevention of and interventions for adverse childhood experiences might reduce the burden of smoking-related illness in the general population.

Adverse childhood experiences are associated with the risk of lung cancer: a prospective cohort study.

BACKGROUND: Strong relationships between exposure to childhood traumatic stressors and smoking behaviours inspire the question whether these adverse childhood experiences (ACEs) are associated with an increased risk of lung cancer during adulthood. METHODS: Baseline survey data on health behaviours, health status and exposure to adverse childhood experiences (ACEs) were collected from 17,337 adults during 1995-1997. ACEs included abuse (emotional, physical, sexual), witnessing domestic violence, parental separation or divorce, or growing up in a household where members with mentally ill, substance abusers, or sent to prison. We used the ACE score (an integer count of the 8 categories of ACEs) as a measure of cumulative exposure to traumatic stress during childhood. Two methods of case ascertainment were used to identify incident lung cancer through 2005 follow-up: 1) hospital discharge records and 2) mortality records obtained from the National Death Index. RESULTS: The ACE score showed a graded relationship to smoking behaviors. We identified 64 cases of lung cancer through hospital discharge records (age-standardized risk = 201 x 100,000(-1) population) and 111 cases of lung cancer through mortality records (age-standardized mortality rate = 31.1 x 100,000(-1) person-years). The ACE score also showed a graded relationship to the incidence of lung cancer for cases identified through hospital discharge (P = 0.0004), mortality (P = 0.025), and both methods combined (P = 0.001). Compared to persons without ACEs, the risk of lung cancer for those with >or= 6 ACEs was increased approximately 3-fold (hospital records: RR = 3.18, 95%CI = 0.71-14.15; mortality records: RR = 3.55, 95%CI = 1.25-10.09; hospital or mortality records: RR = 2.70, 95%CI = 0.94-7.72). After a priori consideration of a causal pathway (i.e., ACEs --> smoking --> lung cancer), risk ratios were attenuated toward the null, although not completely. For lung cancer identified through hospital or mortality records, persons with >or= 6 ACEs were roughly 13 years younger on average at presentation than those without ACEs. CONCLUSIONS: Adverse childhood experiences may be associated with an increased risk of lung cancer, particularly premature death from lung cancer. The increase in risk may only be partly explained by smoking suggesting other possible mechanisms by which ACEs may contribute to the occurrence of lung cancer.

Health-related outcomes of adverse childhood experiences in Texas, 2002.

INTRODUCTION: We assessed the prevalence of 7 childhood adversities (psychological, physical, and sexual abuse; household mental illness; household substance abuse; maternal battery; and incarceration of a household member) and the associations of those adversities with health outcomes. METHODS: Using data from 5,378 people who responded to the 2002 Texas Behavioral Risk Factor Surveillance System survey (which included questions about childhood adversity), we created 4 groups: no childhood abuse or household dysfunction, childhood abuse only, household dysfunction only, and both childhood abuse and household dysfunction. We examined groups by sociodemographic variables and the association with current smoking, obesity, and self-rated health. RESULTS: Among adult respondents, 46% reported at least 1 childhood adversity. Reports of both household dysfunction and abuse were significantly lower for college graduates than for people with less education. For those with both abuse and household dysfunction, the odds of current smoking were 1.9 and for obesity were 1.3. Compared to people without childhood adversities, people who experienced childhood adversities more frequently reported having fair or poor general health status. CONCLUSION: Childhood adversities are common among Texas adults. People with childhood adversities are more likely to be socioeconomically disadvantaged, less educated, and have difficulties maintaining employment in adulthood compared to people with no adversities. Moreover, childhood adversities appear to be associated with health problems such as current smoking, obesity, and poor or fair general health among Texas adults.

Garnering partnerships to bridge gaps among mental health, health care, and public health.

Integrating mental health and public health chronic disease programs requires partnerships at all government levels. Four examples illustrate this approach: 1) a federal partnership to implement mental health and mental illness modules in the Behavioral Risk Factor Surveillance System; 2) a state partnership to improve diabetes health outcomes for people with mental illness; 3) a community-level example of a partnership with local aging and disability agencies to modify a home health service to reduce depression and improve quality of life among isolated, chronically ill seniors; and 4) a second community-level example of a partnership to promote depression screening and management and secure coverage in primary care settings. Integration of mental health and chronic disease public health programs is a challenging but essential and achievable task in protecting Americans' health.

Short self-reported sleep duration among caregivers and non-caregivers in 2016.

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.

Terms and Measures of Cognitive Health Associated With Dementia and Alzheimer's Disease: A Scoping Review.

The Healthy Brain Initiative: National Public Health Road Map to Maintaining Cognitive Health (2007) called on the research community to disseminate its work on cognitive aging and cognitive health. The purpose of this scoping review was to (1) identify terminology that cognitive, social, and behavioral scientists use to describe cognitive aging and cognitive health, in association with dementia and Alzheimer's disease, among older adults; (2) demonstrate how such terms are defined; and (3) illustrate how these constructs are measured in research settings. Empirical studies published 2007-2018 were examined for terminology, definitions, disciplinary orientation, and measurement mechanisms. Analysis of the corpus and a detailed review of the terms "cognitive impairment" and "mild cognitive impairment" reveal that formal definitions are provided infrequently and measurement of constructs ranges widely. Overall, the variability in terminology, definitions, and measures reflects a need for greater specificity in research communication, such that cross-disciplinary collaboration can be facilitated.

Health-related quality of life among adults who experienced maltreatment during childhood.

OBJECTIVES: We sought to assess the difference in a preference-based measure of health among adults reporting maltreatment as a child versus those reporting no maltreatment. METHODS: Using data from a study of adults who reported adverse childhood experiences and current health status, we matched adults who reported childhood maltreatment (n = 2812) to those who reported no childhood maltreatment (n = 3356). Propensity score methods were used to compare the 2 groups. Health-related quality-of-life data (or "utilities") were imputed from the Medical Outcomes Study 36-Item Short Form Health Survey using the Short Form-6D preference-based scoring algorithm. RESULTS: The combined strata-level effects of maltreatment on Short Form-6D utility was a reduction of 0.028 per year (95% confidence interval=0.022, 0.034; P<.001). All utility losses for the childhood-maltreatment versus no-childhood-maltreatment groups by age group were significantly different: 18-39 years, 0.042; 40-49 years, 0.038; 50-59 years, 0.023; 60-69 years, 0.016; 70 or more years, 0.025. CONCLUSIONS: Persons who experienced childhood maltreatment had significant and sustained losses in health-related quality of life in adulthood relative to persons who did not experience maltreatment. These data are useful for assessing the cost-effectiveness of interventions designed to prevent child maltreatment in terms of cost per quality-adjusted life years saved.

Financial and Health Barriers and Caregiving-Related Difficulties Among Rural and Urban Caregivers.

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.

Adverse childhood experiences and childhood autobiographical memory disturbance.

OBJECTIVE: To examine relationships between childhood autobiographical memory disturbance (CAMD) and adverse childhood experiences (ACEs) which are defined as common forms of child maltreatment and related traumatic stressors. METHODS: We use the ACE score (an integer count of eight different categories of ACEs) as a measure of cumulative exposure to traumatic stress during childhood. In a cross sectional analysis we assess the relationship of the ACE score to the prevalence of CAMD in a sample of 9,460 relatively healthy adults evaluated for wellness care at a southern California health maintenance organization between August 1995 and March 1996. In addition, we examined possible secular influences by examining association among each of four birth cohorts. Logistic regression was used to obtain the adjusted relative odds of CAMD associated with increasing ACE score. RESULTS: Overall, the age-standardized prevalence of CAMD was 18% (men: 15%; women: 19%). As the ACE score increased, the prevalence of CAMD increased in a graded fashion for both men and women (p for trend <.0001). After adjustment for age, sex, race/ethnicity, and education, adults with an ACE score >or=6 were 5.9 (95% CI, 4.4-7.9) times more likely to have CAMD compared to adults with an ACE score of 0. The prevalence of CAMD increased with each successive birth cohort, and graded relationships between the ACE score and CAMD were observed among each of the four birth cohorts though no statistical difference in the association was found across birth cohorts. CONCLUSIONS: The accumulation of ACEs across several domains is associated CAMD among men and women and in each of four birth cohorts. Further research is needed that describes the prevalence of CAMD in population-based samples and that examines whether impaired memory is a marker for persons neurobiologically affected by multiple forms of child maltreatment and related traumatic stressors.

Concern about developing Alzheimer's disease or dementia and intention to be screened: An analysis of national survey data.

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.