The transition to family caregiving and its effect on biomarkers of inflammation.

Chronic stress has been widely proposed to increase systemic inflammation, a pathway that may link stress with a heightened risk for many diseases. The chronic stress-inflammation relationship has been challenging to study in humans, however, and family caregiving has been identified as one type of stressful situation that might lead to increased inflammation. Previous studies of caregiving and inflammation have generally used small convenience samples, compared caregivers with poorly characterized control participants, and assessed inflammation only after caregivers provided care for extended periods of time. In the current project, changes over a 9-y period were examined on six circulating biomarkers of inflammation for 480 participants from a large population-based study. All participants reported no involvement in caregiving prior to the first biomarker assessment, and 239 participants then took on extensive and prolonged family caregiving responsibilities at some point prior to the second biomarker assessment. Incident caregivers were individually matched on multiple demographic and health history variables with participants who reported no caregiving responsibilities. Of the six biomarkers examined, only tumor necrosis factor alpha receptor 1 showed a significantly greater increase in caregivers compared with controls. This effect was small (d = 0.14), and no effects were found for a subset of 45 caregivers who were living with a spouse with dementia. These results are consistent with recent meta-analytic findings and challenge the widespread belief that caregiving is a substantial risk factor for increased inflammation. Future research is warranted on factors that may account for stress resilience in family caregivers.

Racial differences in persistence to secondary prevention medication regimens after ischemic stroke.

BACKGROUND: Prior stroke is one of the biggest risk factors for future stroke events. Effective secondary prevention medication regimens can dramatically reduce recurrent stroke risk. Guidelines recommend the use of antithrombotic, antihypertensive and lipid-lowering medications after stroke. Medication adherence is known to be better in the presence of a caregiver but long-term adherence after stroke is unknown and disparities may persist. METHODS: We examined the effects of race and sex on baseline prescription and maintenance of secondary prevention regimens in the presence of a caregiver using the Caring for Adults Recovering from the Effects of Stroke (CARES) study, an ancillary study of the national REasons for Geographic and Racial Differences in Stroke (REGARDS). RESULTS: Incident ischemic stroke survivors (N = 172; 36% Black) with family caregivers had medications recorded at hospital discharge and on average 9.8 months later during a home visit. At discharge, antithrombotic prescription (95.9%), lipid-lowering medications (78.8%) and antihypertensives (89.9%) were common and there were no race or sex differences in discharge prescription rates. One year later, medication persistence had fallen to 86.6% for antithrombotics (p = 0.002) and 69.8% for lipid lowering (p = 0.008) but increased to 93.0% for antihypertensives (p = 0.30). Blacks were more likely to have discontinued antithrombotics than Whites (18.3% v 7.7%, p = 0.04). No significant differences in persistence were seen with age, sex, income, depression, or cognitive impairment. CONCLUSIONS: Medication persistence was high in this sample, likely due to the presence of a caregiver. In our cohort, despite similar prescription rates at the time of hospital discharge, Black stroke survivors were more than twice as likely to stop antithrombotics than Whites. The effect of changes in patterns of medication usage on health outcomes in Black stroke survivors warrants continued investigation.

Continuous cardiac rhythm monitoring post-stroke: A feasibility study in REGARDS.

OBJECTIVES: Cardiac rhythm monitoring is increasingly used after stroke. We studied feasibility of telephone guided, mail-in ambulatory long-term cardiac rhythm monitoring in Black and White stroke survivors. MATERIALS AND METHODS;: We contacted 28 participants of the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study who had an ischemic stroke during follow-up. After obtaining informed consent by telephone, a noninvasive 14-day cardiac rhythm monitoring device (ZIO® XT patch; iRhythm Technologies, San Francisco, CA) was mailed to each participant. We evaluated the results of telephone consent, follow-up calls, compliance and wear time as the primary objective. Secondarily, we reported prevalence of atrial and ventricular arrhythmias. RESULTS: The majority of those contacted (20/28 = 71%) agreed to enroll in the monitoring study. Non-participation was nominally more common in Black than White participants; 6/16 (37.5%) vs. 2/12 (17%). Of those who agreed, 15 participants (75%, 6 Black, 9 White) completed ambulatory monitoring with mean wear time 12.9 ± 2.5 days. Arrhythmias were observed in two-thirds of the 15 participants: AF in 2, brief atrial tachycardia in 12, NSVT in 2, premature ventricular contractions in 3, and pause or atrioventricular block in 2. CONCLUSIONS: Non-invasive rhythm monitoring was feasible in this pilot from a large, national cohort study of stroke survivors that employed a telephone guided, mail-in monitoring system, and these preliminary results suggest a high prevalence of arrhythmias. Increased emphasis on recruitment strategies for Black stroke survivors may be required. We demonstrated a high yield of significant cardiac arrhythmias among post-stroke participants who completed monitoring.

Depressive Symptoms After Ischemic Stroke: Population-Based Comparisons of Patients and Caregivers With Matched Controls.

Background and Purpose- Persistent depression after ischemic stroke is common in stroke survivors and may be even higher in family caregivers, but few studies have examined depressive symptom levels and their predictors in patient and caregiver groups simultaneously. Methods- Stroke survivors and their family caregivers (205 dyads) were enrolled from the national REGARDS study (Reasons for Geographic and Racial Differences in Stroke) into the CARES study (Caring for Adults Recovering from the Effects of Stroke) ≈9 months after a first-time ischemic stroke. Demographically matched stroke-free dyads (N=205) were also enrolled. Participants were interviewed by telephone, and depressive symptoms were assessed with the 20-item Center for Epidemiological Studies-Depression scale. Results- Significant elevations in depressive symptoms (Ps<0.03) were observed for stroke survivors (M=8.38) and for their family caregivers (M=6.42) relative to their matched controls (Ms=5.18 and 4.62, respectively). Stroke survivors reported more symptoms of depression than their caregivers (P=0.008). No race or sex differences were found, but differential prediction of depressive symptom levels was found across patients and caregivers. Younger age and having an older caregiver were associated with more depressive symptoms in stroke survivors while being a spouse caregiver and reporting fewer positive aspects of caregiving were associated with more depressive symptoms in caregivers. The percentage of caregivers at risk for clinically significant depression was lower in this population-based sample (12%) than in previous studies of caregivers from convenience or clinical samples. Conclusions- High depressive symptom levels are common 9 months after first-time ischemic strokes for stroke survivors and family caregivers, but rates of depressive symptoms at risk for clinical depression were lower for caregivers than previously reported. Predictors of depression differ for patients and caregivers, and standards of care should incorporate family caregiving factors.

Association Between Patients' Self-Reported Gaps in Care Coordination and Preventable Adverse Outcomes: a Cross-Sectional Survey.

BACKGROUND: Whether patients' reports of gaps in care coordination reflect clinically significant problems is unclear. OBJECTIVE: To determine any association between patient-reported gaps in care coordination and patient-reported preventable adverse outcomes. DESIGN AND PARTICIPANTS: We administered a cross-sectional survey on experiences with healthcare to participants in the national Reasons for Geographic and Racial Differences in Stroke (REGARDS) study who were ≥ 65 years old. Of the 15,817 participants in REGARDS at the time of our survey (August 2017-November 2018), 11,138 completed the survey. We restricted the sample to participants who reported ≥ 2 ambulatory visits and ≥ 2 ambulatory providers in the past year (N = 7568). MAIN MEASURES: We considered 7 gaps in ambulatory care coordination, elicited with previously validated questions. We considered 4 outcomes: (1) a test that was repeated because the doctor did not have the result of the first test, (2) a drug-drug interaction that occurred due to multiple prescribers, (3) an emergency department visit that could have been prevented by better communication among providers, and (4) a hospital admission that could have been prevented by better communication among providers. We used logistic regression to determine the association between ≥ 1 gap in care coordination and ≥ 1 preventable outcome, adjusting for potential confounders. KEY RESULTS: The average age of the sample was 77.0 years; 55% were female, and 34% were African-American. More than one-third of participants (38.1%) reported ≥ 1 gap in care coordination and nearly one-tenth (9.8%) reported ≥ 1 preventable outcome. Having ≥ 1 gap in care coordination was associated with an increased odds of ≥ 1 preventable outcome (adjusted odds ratio 1.55; 95% confidence interval 1.33, 1.81). CONCLUSIONS: Participants' reports of gaps in care coordination were associated with an increased odds of preventable adverse outcomes. Future interventions should leverage patients' observations to detect and resolve gaps in care coordination.

Medical therapy following hospitalization for heart failure with reduced ejection fraction and association with discharge to long-term care: a cross-sectional analysis of the REasons for Geographic And Racial Differences in Stroke (REGARDS) population.

BACKGROUND: Less intensive treatment for heart failure with reduced ejection fraction (HFrEF) may be appropriate for patients in long-term care settings because of limited life expectancy, frailty, comorbidities, and emphasis on quality of life. METHODS: We compared treatment patterns between REasons for Geographic And Racial Differences in Stroke (REGARDS) study participants discharged to long-term care versus home following HFrEF hospitalizations. We examined medical records and Medicare pharmacy claims for 147 HFrEF hospitalizations among 80 participants to obtain information about discharge disposition and medication prescriptions and fills. RESULTS: Discharge to long-term care followed 22 of 147 HFrEF hospitalizations (15%). Participants discharged to long-term care were more likely to be prescribed beta-blockers and less likely to be prescribed aldosterone receptor antagonists and hydralazine/isosorbide dinitrate (96%, 14%, and 5%, respectively) compared to participants discharged home (81%, 22%, and 23%, respectively). The percentages of participants discharged to long-term care and home who had claims for filled prescriptions were similar for beta-blockers (68% versus 66%) and angiotensin converting enzyme inhibitors or angiotensin receptor blockers (ACEI/ARBs) (45% versus 47%) after 1 year. Smaller percentages of participants discharged to long-term care had claims for filled prescriptions of other medications compared to participants discharged home (diuretics: long-term care-50%, home-72%; hydralazine/isosorbide dinitrate: long-term care-5%, home-23%; aldosterone receptor antagonists: long-term care-5%, home-23%). CONCLUSIONS: Differences in medication prescriptions and fills among individuals with HFrEF discharged to long-term care versus home may reflect prioritization of some medical therapies over others for patients in long-term care.

Stroke Symptoms as a Predictor of Future Hospitalization.

BACKGROUND: Stroke symptoms in the general adult population are common and associated with stroke risk factors, lower physical and mental functioning, impaired cognitive status, and future stroke. Our objective was to determine the association of stroke symptoms with self-reported hospitalization or emergency department (ED) visit. METHODS: Lifetime history of stroke symptoms (sudden weakness, numbness, unilateral or general loss of vision, loss of ability to communicate or understand) was assessed at baseline in a national, population-based, longitudinal cohort study of 30,239 blacks and whites younger than 45 years, enrolled from 2003 to 2007. Self-reported hospitalization or ED visit and reason were collected during follow-up through March 2013. The symptom-hospitalization association was assessed by proportional hazards analysis in persons who were stroke/transient ischemic attack-free at baseline (27,126) with adjustment for sociodemographics and further adjustment for risk factors. RESULTS: One or more stroke symptoms were reported by 4758 (17.5%). After adjustment for sociodemographics, stroke symptoms were most strongly associated with greater risk of hospitalization/ED for cardiovascular disease (CVD) (hazard ratio [HR] = 1.87, 95% confidence interval [CI]: 1.78-1.96), stroke (HR = 1.69, 95% CI: 1.55-1.85), and any reason (HR = 1.39, 95% CI: 1.34-1.44). These associations remained significant and only modestly reduced after risk factor adjustment. CONCLUSIONS: Stroke symptoms are a marker for future hospitalization and ED visit not only for stroke but also for CVD in general. Findings suggest a role for stroke symptom assessment as a novel and simple approach for identifying individuals at high risk for CVD including stroke in whom preventive strategies could be implemented.

Stroke Severity, Caregiver Feedback, and Cognition in the REGARDS-CARES Study.

Objective: Cognitive impairment after stroke is common, present up to 60% of survivors. Stroke severity, indicated by both volume and location, is the most consequential predictor of cognitive impairment, with severe strokes predicting higher chances of cognitive impairment. The current investigation examines the associations of two stroke severity ratings and a caregiver-report of post-stroke functioning with longitudinal cognitive outcomes. Methods: The analysis was conducted on 157 caregivers and stroke survivor dyads who participated in the Caring for Adults Recovering from the Effects of Stroke (CARES) project, an ancillary study of the REasons for Geographic and Racial Differences in Stroke (REGARDS) national cohort study. Glasgow Outcome Scale (GOS) and modified Rankin Scale (mRS) collected at hospitalization discharge were included as two primary predictors of cognitive impairment. The number of caregiver-reported problems and impairments at nine months following stroke were included as a third predictor. Cognition was assessed using a biennial telephone battery, incorporating multiple cognitive assessments to assess learning, memory, and executive functioning. Longitudinal cognitive scores were analyzed up to five years post-stroke, controlling for baseline (pre-stroke) cognitive scores and demographic variables of each stroke survivor collected at CARES baseline. Results: Separate mixed models showed significant main effects of GOS (b=0.3280, p=0.0009), mRS (b=-0.2119, p=0.0002), and caregiver-reported impairments (b=-0.0671, p<0.0001) on longitudinal cognitive scores. In a combined model including all three predictors, only caregiver-reported problems significantly predicted cognitive outcomes (b=-0.0480, p<0.0001). Impact: These findings underscore the importance of incorporating caregivers feedback in understanding cognitive consequences of stroke.

Stroke after carotid stenting and endarterectomy in the Carotid Revascularization Endarterectomy versus Stenting Trial (CREST).

BACKGROUND: Stroke occurs more commonly after carotid artery stenting than after carotid endarterectomy. Details regarding stroke type, severity, and characteristics have not been reported previously. We describe the strokes that have occurred in the Carotid Revascularization Endarterectomy versus Stenting Trial (CREST). METHODS AND RESULTS: CREST is a randomized, open-allocation, controlled trial with blinded end-point adjudication. Stroke was a component of the primary composite outcome. Patients who received their assigned treatment within 30 days of randomization were included. Stroke was adjudicated by a panel of board-certified vascular neurologists with secondary central review of clinically obtained brain images. Stroke type, laterality, timing, and outcome were reported. A periprocedural stroke occurred among 81 of the 2502 patients randomized and among 69 of the 2272 in the present analysis. Strokes were predominantly minor (81%, n=56), ischemic (90%, n=62), in the anterior circulation (94%, n=65), and ipsilateral to the treated artery (88%, n=61). There were 7 hemorrhages, which occurred 3 to 21 days after the procedure, and 5 were fatal. Major stroke occurred in 13 (0.6%) of the 2272 patients. The estimated 4-year mortality after stroke was 21.1% compared with 11.6% for those without stroke. The adjusted risk of death at 4 years was higher after periprocedural stroke (hazard ratio, 2.78; 95% confidence interval, 1.63-4.76). CONCLUSIONS: Stroke, particularly severe stroke, was uncommon after carotid intervention in CREST, but stroke was associated with significant morbidity and was independently associated with a nearly 3-fold increased future mortality. The delayed timing of major and hemorrhagic stroke after revascularization suggests that these strokes may be preventable.

Self-report of stroke, transient ischemic attack, or stroke symptoms and risk of future stroke in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study.

BACKGROUND AND PURPOSE: History of stroke and transient ischemic attack (TIA) are documented risk factors for subsequent stroke and all-cause mortality. Recent reports suggest increased risk among those reporting stroke symptoms absent stroke or TIA. However, the relative magnitude of increased stroke risk has not been described across the symptomatic spectrum: (1) asymptomatic, (2) stroke symptoms (SS) only, (3) TIA, (4) distant stroke (DS), and (5) recent stroke (RS). METHODS: Between 2003 and 2007, the REasons for Geographic And Racial Differences in Stroke (REGARDS) study enrolled 30 239 black and white Americans ≥45 years of age. DS and RS were defined as self-report of physician diagnosis of stroke >5 or <5 years before baseline, respectively. SS was defined as a history of any of 6 sudden onset stroke symptoms absent TIA/stroke diagnosis. Kaplan-Meier and proportional hazards analysis were used to contrast stroke risk differences. RESULTS: Over 5.0±1.72 years of follow-up, 737 strokes were validated. Compared with asymptomatic persons, those with SS, TIA, DS, and RS all had increased risk of future stroke. After adjustment for age, race, sex, income, education, alcohol intake, current smoking, and a history of diabetes mellitus, hypertension, myocardial infarction, atrial fibrillation, and dyslipidemia, there was 1.20-fold (not statistically significant) increased stroke risk for SS (95% CI, 0.96-1.51), 1.73-fold for TIA (95% CI, 1.27-2.36), 2.23-fold for DS (95% CI, 1.61- 3.09), and 2.85-fold for RS (95% CI, 2.16-3.76). CONCLUSIONS: Results suggest a spectrum of risk from stroke symptoms to TIA, DS, and RS, and imply a need for establishing these categories in health screenings to manage risk for future stroke, reinforcing the clinical importance of stroke history including the presence of stroke symptoms.

Disparities in evaluation at certified primary stroke centers: reasons for geographic and racial differences in stroke.

BACKGROUND AND PURPOSE: Evaluation at primary stroke centers (PSCs) has the potential to improve outcomes for patients with stroke. We looked for differences in evaluation at Joint Commission certified PSCs by race, education, income, and geography (urban versus nonurban; Southeastern Stroke Belt versus non-Stroke Belt). METHODS: Community-dwelling, black and white participants from the national Reasons for Geographic And Racial Differences in Stroke (REGARDS) prospective population-based cohort were enrolled between January 2003 and October 2007. Participants were contacted at 6-month intervals for suspected stroke events. For suspected stroke events, it was determined whether the evaluating hospital was a certified PSC. RESULTS: Of 1000 suspected strokes, 204 (20.4%) strokes were evaluated at a PSC. A smaller proportion of women than men (17.8% versus 23.0%; P=0.04), those with a previous stroke (15.1% versus 21.6%; P=0.04), those living in the Stroke Belt (14.7% versus 27.3%; P<0.001), and those in a nonurban area (9.1% versus 23.1%; P<0.001) were evaluated at a PSC. There were no differences by race, education, or income. In multivariable analysis, subjects were less likely to be evaluated at a PSC if they lived in a nonurban area (odds ratio, 0.39; 95% confidence interval, 0.22-0.67) or lived in the Stroke Belt (odds ratio, 0.54; 95% confidence interval, 0.38-0.77) or had a previous stroke (odds ratio, 0.46; 95% confidence interval, 0.27-0.78). CONCLUSIONS: Disparities in evaluation by PSCs are predominately related to geographic factors but not to race, education, or low income. Despite an increased burden of cerebrovascular disease in the Stroke Belt, subjects there were less likely to be evaluated at certified hospitals.

Disparities in stroke incidence contributing to disparities in stroke mortality.

OBJECTIVE: While black-white and regional disparities in U.S. stroke mortality rates are well documented, the contribution of disparities in stroke incidence is unknown. We provide national estimates of stroke incidence by race and region, contrasting these to publicly available stroke mortality data. METHODS: This analysis included 27,744 men and women without prevalent stroke (40.4% black), aged ≥45 years from the REasons for Geographic And Racial Differences in Stroke (REGARDS) national cohort study, enrolled 2003-2007. Incident stroke was defined as first occurrence of stroke over 4.4 years of follow-up. Age-sex-adjusted stroke mortality rates were calculated using data from the Centers for Disease Control and Prevention (CDC) Wide-Ranging Online Data for Epidemiological Research (WONDER) System. RESULTS: There were 460 incident strokes over 113,469 person-years of follow-up. Relative to the rest of the United States, incidence rate ratios (IRRs) of stroke in the southeastern stroke belt and stroke buckle were 1.06 (95% confidence interval [CI], 0.87-1.29) and 1.19 (95% CI, 0.96-1.47), respectively. The age-sex-adjusted black/white IRR(black) was 1.51 (95% CI, 1.26-1.81), but for ages 45-54 years the IRR(black) was 4.02 (95% CI, 1.23-13.11) while for ages 85+ it was 0.86 (95% CI, 0.33-2.20). Generally, the IRRs(black) were less than the mortality rate ratios (MRRs) across age groups; however, only in ages 55-64 years and 65-74 years did the 95% CIs of IRRs(black) not include the MRR(black) . The MRRs for regions were within 95% CIs for IRRs. INTERPRETATION: National patterns of black-white and regional differences in stroke incidence are similar to those for stroke mortality; however, the magnitude of differences in incidence appear smaller.

Sleep Quality Reports From Family Caregivers and Matched Non-caregiving Controls in a Population-Based Study.

The stress of family caregiving may affect many health-related variables, including sleep. We evaluated differences in self-reported sleep quality between incident caregivers and matched non-caregiving controls from a national population-based study. Caregivers and controls were identified in the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study and matched on seven different demographic and health history factors. Caregivers reported significantly longer sleep onset latency than controls, before and after adjusting for covariates (ps < .05). No differences were found on measures of total sleep time or sleep efficiency. Among caregivers only, employed persons reported less total sleep time and number of care hours was a significant predictor of total sleep time. Dementia caregivers did not differ from other caregivers. This is one of the few population-based studies of sleep quality in family caregivers. Additional research is needed to examine whether sleep disturbance contributes to greater health problems among caregivers.

Race and gender differences in 1-year outcomes for community-dwelling stroke survivors with family caregivers.

BACKGROUND AND PURPOSE: Previous research has reported worse outcomes after stroke for women and for African Americans, but few prospective population-based studies have systematically examined demographic differences on long-term stroke outcomes. Race and gender differences in 1-year stroke outcomes were examined using an epidemiologically derived sample of first-time stroke survivors from the national REasons for Geographic and Racial Differences in Stroke (REGARDS) study. METHODS: Participants of REGARDS who reported a first-time stroke event during regular surveillance calls were interviewed by telephone and then completed an in-home evaluation approximately 1 year after the verified first-time stroke event (N=112). A primary family caregiver was also enrolled and interviewed for each stroke survivor. Measures from the in-home evaluation included previously validated stroke outcomes assessments of neurological deficits, functional impairments, and patient-reported effects of stroke in multiple domains. Results- African American stroke survivors were less likely to be living with their primary family caregivers than white participants. Analyses that controlled for age, education, and whether the stroke survivors lived with their primary family caregivers indicated that African Americans and women showed significantly greater deficits on multiple 1-year outcome measures compared to whites and men, respectively. CONCLUSIONS: Among community-dwelling stroke survivors with family caregivers, women and African Americans are at heightened risk for poor long-term outcomes 1 year after first-time stroke events. Rehabilitation services and public health policies aimed at enhancing stroke recovery rates should address these disparities in poststroke outcomes.

Traditional risk factors as the underlying cause of racial disparities in stroke: lessons from the half-full (empty?) glass.

BACKGROUND AND PURPOSE: Black/white disparities in stroke incidence are well documented, but few studies have assessed the contributions to the disparity. Here we assess the contribution of "traditional" risk factors. METHODS: A total of 25 714 black and white men and women, aged≥45 years and stroke-free at baseline, were followed for an average of 4.4 years to detect stroke. Mediation analysis using proportional hazards analysis assessed the contribution of traditional risk factors to racial disparities. RESULTS: At age 45 years, incident stroke risk was 2.90 (95% CI: 1.72-4.89) times more likely in blacks than in whites and 1.66 (95% CI: 1.34-2.07) times at age 65 years. Adjustment for risk factors attenuated these excesses by 40% and 45%, respectively, resulting in relative risks of 2.14 (95% CI: 1.25-3.67) and 1.35 (95% CI: 1.08-1.71). Approximately one half of this mediation is attributable to systolic blood pressure. Further adjustment for socioeconomic factors resulted in total mediation of 47% and 53% to relative risks of 2.01 (95% CI: 1.16-3.47) and 1.30 (1.03-1.65), respectively. CONCLUSIONS: Between ages 45 to 65 years, approximately half of the racial disparity in stroke risk is attributable to traditional risk factors (primarily systolic blood pressure) and socioeconomic factors, suggesting a critical need to understand the disparity in the development of these traditional risk factors. Because half of the excess stroke risk in blacks is not attributable to traditional risk factors and socioeconomic factors, differential impact of risk factors, residual confounding, or nontraditional risk factors may also play a role.

Stress, Burden, and Well-Being in Dementia and Nondementia Caregivers: Insights From the Caregiving Transitions Study.

BACKGROUND AND OBJECTIVES: Few population-based studies have directly compared caregivers of persons with dementia to caregivers of persons with other disabilities (nondementia caregivers). We enrolled dementia and nondementia caregivers who were providing substantial and sustained care and compared these groups on measures of caregiver stressors, appraisals of burden, and well-being. RESEARCH DESIGN AND METHODS: Caregivers (N = 251) who provided continuous care for at least 1 year and at least 5 h per week were recruited from the population-based REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Caregivers reported on dementia caregiving status, stressors, burden, and well-being. RESULTS: Forty-seven percent (n = 117) reported caring for a person with dementia. Dementia caregivers reported more stressors, providing more care for self-care and behavioral problems than nondementia caregivers. Dementia caregivers also reported higher appraisals of stress and burden, and more depressive symptoms, but did not differ from nondementia caregivers on mental and physical health quality of life. In multivariable-adjusted models, adjustment for the total number of care recipient problems attenuated differences between dementia and nondementia caregivers on burden and depression measures. DISCUSSION AND IMPLICATIONS: Dementia and nondementia caregivers showed relatively few differences in indicators of overall well-being in this population-based sample, perhaps because both groups of caregivers in this study were providing substantial care. Dementia caregivers may require special assistance with dementia-specific problems such as behavioral problems. Clinical interventions and policy changes targeting highly burdened caregivers are needed to support them in allowing their care recipients to age in place at home.

Effects of Transitions to Family Caregiving on Well-Being: A Longitudinal Population-Based Study.

BACKGROUND/OBJECTIVES: Few studies have rigorously examined the magnitude of changes in well-being after a transition into sustained and substantial caregiving, especially in population-based studies, compared with matched noncaregiving controls. DESIGN: We identified individuals from a national epidemiological investigation who transitioned into caregiving over a 10- to 13-year follow-up and provided continuous in-home care for at least 18 months and at least 5 hours per week. Individuals who did not become caregivers were individually matched with caregivers on age, sex, race, education, marital status, self-rated health, and history of cardiovascular disease at baseline. Both groups were assessed at baseline and follow-up. SETTING: REasons for Geographic And Racial Differences in Stroke study. PARTICIPANTS: A total of 251 incident caregivers and 251 matched controls. MEASUREMENTS: Perceived Stress Scale (PSS), 10-Item Center for Epidemiological Studies-Depression (CES-D), and 12-item Short-Form Health Survey quality-of-life mental (MCS) and physical (PCS) component scores. RESULTS: Caregivers showed significantly greater worsening in PSS, CES-D, and MCS, with standardized effect sizes ranging from 0.676 to 0.796 compared with changes in noncaregivers. A significant but smaller effect size was found for worsening PCS in caregivers (0.242). Taking on sustained caregiving was associated with almost a tripling of increased risk of transitioning to clinically significant depressive symptoms at follow-up. Effects were not moderated by race, sex, or relationship to care recipient, but younger caregivers showed greater increases in CES-D than older caregivers. CONCLUSION: Persons who began substantial, sustained family caregiving had marked worsening of psychological well-being, and relatively smaller worsening of self-reported physical health, compared with carefully matched noncaregivers. Previous estimates of effect sizes on caregiver well-being have had serious limitations due to use of convenience sampling and cross-sectional comparisons. Researchers, public policy makers, and clinicians should note these strong effects, and caregiver assessment and service provision for psychological well-being deserve increased priority.

Evaluation of Racial Disparities in Hospice Use and End-of-Life Treatment Intensity in the REGARDS Cohort.

Importance: Although hospice use is increasing and patients in the US are increasingly dying at home, racial disparities in treatment intensity at the end of life, including hospice use, remain. Objective: To examine differences between Black and White patients in end-of-life care in a population sample with well-characterized causes of death. Design, Setting, and Participants: This study used data from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an ongoing population-based cohort study with enrollment between January 25, 2003, and October 3, 2007, with linkage to Medicare claims data. Multivariable logistic regression models were used to examine racial and regional differences in end-of-life outcomes and in stroke mortality among 1212 participants with fee-for-service Medicare who died between January 1, 2013, and December 31, 2015, owing to natural causes and excluding sudden death, with oversampling of Black individuals and residents of Southeastern states in the United States. Initial analyses were conducted in March 2019, and final primary analyses were conducted in February 2020. Main Outcomes and Measures: The primary outcomes of interest were hospice use of 3 or more days in the last 6 months of life derived from Medicare claims files. Other outcomes included multiple hospitalizations, emergency department visits, and use of intensive procedures in the last 6 months of life. Cause of death was adjudicated by an expert panel of clinicians using death certificates, proxy interviews, autopsy reports, and medical records. Results: The sample consisted of 1212 participants (630 men [52.0%]; 378 Black individuals [31.2%]; mean [SD] age at death, 81.0 [8.6] years) of 2542 total deaths. Black decedents were less likely than White decedents to use hospice for 3 or more days (132 of 378 [34.9%] vs 385 of 834 [46.2%]; P < .001). After stratification by cause of death, substantial racial differences in treatment intensity and service use were found among persons who died of cardiovascular disease but not among patients who died of cancer. In analyses adjusted for cause of death (dementia, cancer, cardiovascular disease, and other) and clinical and demographic variables, Black decedents were significantly less likely to use 3 or more days of hospice (odds ratio [OR], 0.72; 95% CI, 0.54-0.96) and were more likely to have multiple emergency department visits (OR, 1.35; 95% CI, 1.01-1.80) and hospitalizations (OR, 1.39; 95% CI, 1.02-1.89) and undergo intensive treatment (OR, 1.94; 95% CI, 1.40-2.70) in the last 6 months of life compared with White decedents. Conclusions and Relevance: Despite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice remain, especially for noncancer deaths. More research is required to better understand racial disparities in access to and quality of end-of-life care.

Stroke Survivor and Family Caregiver Reports of Caregiver Engagement in Stroke Care.

PURPOSE: The aim of the study was to identify areas of caregiver engagement in stroke care as viewed by stroke survivors and family caregivers. DESIGN: Interviews with stroke survivor/caregiver dyads (N = 71) from a population-based study of incident stroke. METHODS: We interviewed stroke survivors and caregivers about caregiver involvement at multiple stages of stroke care. We assessed similarities and differences between stroke survivor and caregiver reports and analyzed responses to open-ended questions. FINDINGS: Stroke survivor and caregiver reports of engagement were highly correlated (r = .89), although caregivers reported higher involvement. Open-ended comments suggested that, in about 25% of cases, stroke survivors and caregivers agreed that caregiver engagement led to major improvements in stroke survivor care, most commonly during onset of symptoms. CONCLUSIONS: Stroke survivors and caregivers report significant and impactful caregiver engagement throughout the course of stroke. CLINICAL RELEVANCE: Clinicians may enhance stroke care by recognizing and facilitating caregiver efforts across all phases of stroke care.

Sex and Race Differences in the Association of Incident Ischemic Stroke With Risk Factors.

Importance: Race-specific and sex-specific stroke risk varies across the lifespan, yet few reports describe sex differences in stroke risk separately in black individuals and white individuals. Objective: To examine incidence and risk factors for ischemic stroke by sex for black and white individuals. Design, Setting, and Participants: This prospective cohort study included participants 45 years and older who were stroke-free from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) cohort, enrolled from the continental United States 2003 through 2007 with follow-up through October 2016. Data were analyzed from March 2018 to September 2018. Exposures: Sex and race. Main Outcomes and Measures: Physician-adjudicated incident ischemic stroke, self-reported race/ethnicity, and measured and self-reported risk factors. Results: A total of 25 789 participants (14 170 women [54.9%]; 10 301 black individuals [39.9%]) were included. Over 222 120 person-years of follow-up, 939 ischemic strokes occurred: 159 (16.9%) in black men, 326 in white men (34.7%), 217 in black women (23.1%), and 237 in white women (25.2%). Between 45 and 64 years of age, white women had 32% lower stroke risk than white men (incidence rate ratio [IRR], 0.68 [95% CI, 0.49-0.94]), and black women had a 28% lower risk than black men (IRR, 0.72 [95% CI, 0.52-0.99]). Lower stroke risk in women than men persisted at age 65 through 74 years in white individuals (IRR, 0.71 [95% CI, 0.55-0.94]) but not in black individuals (IRR, 0.94 [95% CI, 0.68-1.30]); however, the race-sex interaction was not significant. At 75 years and older, there was no sex difference in stroke risk for either race. For white individuals, associations of systolic blood pressure (women: hazard ratio [HR], 1.13 [95% CI, 1.05-1.22]; men: 1.04 [95% CI, 0.97-1.11]; P = .099), diabetes (women: HR, 1.84 [95% CI, 1.35-2.52]; men: 1.13 [95% CI, 0.86-1.49]; P = .02), and heart disease (women: HR, 1.76 [95% CI, 1.30-2.39]; men, 1.26 [95% CI, 0.99-1.60]; P = .09) with stroke risk were larger for women than men, while antihypertensive medication use had a smaller association in women than men (women: HR, 1.17 [95% CI, 0.89-1.54]; men: 1.61 [95% CI, 1.29-2.03]; P = .08). In black individuals, there was no evidence of a sex difference for any risk factors. Conclusions and Relevance: For both races, at age 45 through 64 years, women were at lower stroke risk than men, and there was no sex difference at 75 years or older; however, the sex difference pattern may differ by race from age 65 through 74 years. The association of risk factors on stroke risk differed by race-sex groups. While the need for primordial prevention, optimal management, and control of risk factors is universal across all age, racial/ethnic, and sex groups, some demographic subgroups may require earlier and more aggressive strategies.