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

Abstract 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.

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DEMENTIA CAREGIVING NEGATIVELY AFFECTS THE HEALTH OF CAREGIVER AND CARE RECIPIENT. CAREGIVING TRANSITIONS STUDY

Innovation in Aging ◽

10.1093/geroni/igz038.801 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S219-S219

Author(s):

Orla C Sheehan ◽

William E Haley ◽

Virginia Howard ◽

Jin Huang ◽

J David Rhodes ◽

...

Keyword(s):

Racial Differences ◽

Family Caregiving ◽

Population Based ◽

Care Recipient ◽

Eligibility Criteria ◽

Dementia Caregivers ◽

Cross Sectional ◽

Regards Study ◽

Caregiving Roles ◽

Person With Dementia

Abstract Dementia is one of the most common reasons for needing a caregiver (CG). Few studies have compared dementia and non-dementia caregivers who have transitioned into family caregiving roles. Participants in the REasons for Geographic and Racial Differences in Stroke (REGARDS) study who transitioned into a significant caregiving role were recruited to participate in the Caregiving Transitions Study (CTS). Of 11,483 REGARDS participants who were not caregivers at baseline, 1229 (11%) transitioned into a family caregiving role. Eligibility criteria were met by 251 and they were enrolled along with 251 demographically-matched noncaregiving controls. Enrolled caregivers are 65% female; 36% African American; 71.8 + 8.1 years of age; caring for a spouse/partner (51%), parent (25%), or another person (24%). 47% are caring for a person with dementia. Dementia CGs provide more hours of care per day (9.3 hours versus 6.7 hours), report being under more stress and twice as much strain as non-dementia CGs (p<0.03 for all). They feel more burdened by the care recipient’s treatment (p=0.01) and report that the burden leads to delays in the care recipient receiving medical care (p<0.007). Dementia CGs are more than twice as likely as non-caregivers to report that their caregiving makes them worse at taking care of their own health (33.9% versus 15.4%, p=0.003). This prospective, population-based study confirms previous cross-sectional findings from convenience samples on the greater care burden experienced by dementia caregivers and extends this work to new measures of treatment burden and treatment delay.

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Perception Versus Reality: Subjective and Objective Neighborhood Characteristics and Cognitive Function in REGARDS

Innovation in Aging ◽

10.1093/geroni/igaa057.2470 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 703-703

Author(s):

Jessica Finlay ◽

Philippa Clarke ◽

Lisa Barnes

Keyword(s):

Older Adults ◽

Cognitive Function ◽

Racial Differences ◽

Secondary Data ◽

Well Being ◽

Daily Basis ◽

Cognitive Status ◽

Functional Mobility ◽

Neighborhood Size ◽

Regards Study

Abstract Does the world shrink as we age? The neighborhood captures a spatial area someone inhabits and moves through on a daily basis. It reflects a balance between internal perceptions and abilities, and the external environment which may enable or restrict participation in everyday life. We frequently hear that older adults have shrinking neighborhoods given declining functional mobility. This is associated with declines in physical and cognitive functioning, depression, poorer quality of life, and mortality. Knowledge of the interplay between objective and subjective neighborhood measurement remains limited. This symposium will explore these linked yet distinct constructs based on secondary data analyses of the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, a racially diverse sample of 30,000+ aging Americans. Finlay investigates how someone’s perceived neighborhood size (in number of blocks) varies by individual and geographic characteristics including age, cognitive function, self-rated health, and urban/rural context. Esposito’s analyses focus on neighborhood size in relation to race and residential segregation. Clarke compares subjective perceptions of neighborhood parks and safety from crime to objective indicators, and examines variations by health and cognitive status. Barnes will critically consider implications for how older adults interpret and engage with their surrounding environments. The symposium questions the validity of neighborhood-based metrics to reflect the perspectives and experiences of older residents, particularly those navigating cognitive decline. It informs policy-making efforts to improve physical neighborhood environments and social community contexts, which are critical to the health and well-being of older adults aging in place.

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SYSTEMATIC REVIEW AND META-ANALYSIS OF RACIAL AND ETHNIC DIFFERENCES IN DEMENTIA CAREGIVER WELL-BEING

Innovation in Aging ◽

10.1093/geroni/igz038.1624 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S434-S434

Author(s):

Chelsea Liu ◽

Adrian Badana ◽

Julia Burgdorf ◽

Chanee D Fabius ◽

William E Haley ◽

...

Keyword(s):

Systematic Review ◽

Ethnic Differences ◽

Meta Analysis ◽

Well Being ◽

Population Based ◽

Dementia Caregivers ◽

Convenience Sample ◽

Dementia Caregiver ◽

Racial Ethnic ◽

Physical Outcomes

Abstract Studies comparing racial/ethnic differences on psychological and physical outcomes of dementia caregivers have often reported differences in well-being for minority groups compared to Whites. However, due to issues with enrolling minorities into studies, recruitment methods often differ for minority and White participants and may lead to biased comparisons. We conducted a systematic review and meta-analysis to examine racial/ethnic differences in dementia caregiver outcomes and to determine whether any differences vary among studies with population-based samples compared to convenience samples. We systematically reviewed articles with primary data from PubMed, Google Scholar and PsycINFO, and included studies comparing either African American (AA) or Hispanic/Latino dementia caregivers to White caregivers on measures of psychological health (e.g. depression, anxiety, burden) and physical health (e.g. self-rated health, cardiovascular measures, stress biomarkers). Reviewers screened titles and abstracts, reviewed full texts and conducted risk-of-bias assessments. A total of 207 effects were extracted from 40 studies. Random-effects models showed that Hispanics/Latinos reported significantly lower levels of well-being than Whites (ps < .05) for both psychological outcomes (37 effects) and physical outcomes (15 effects), while AAs were not significantly different from Whites in either domain. No differences were observed for population-based studies (N=3; 23 effects) or convenience-sample studies (N=37; 184 effects). Although some previous studies with convenience samples found better psychological well-being in AA caregivers, that pattern was not confirmed in our meta-analysis. Additional analyses for the different indicators of well-being and the relationship of quality ratings to effect sizes will be discussed along with implications for future research.

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Development and validation of the Caregiver Guilt Questionnaire

International Psychogeriatrics ◽

10.1017/s1041610210000074 ◽

2010 ◽

Vol 22 (4) ◽

pp. 650-660 ◽

Cited By ~ 32

Author(s):

Andrés Losada ◽

María Márquez-González ◽

Cecilia Peñacoba ◽

Rosa Romero-Moreno

Keyword(s):

Behavioral Problems ◽

Family Care ◽

Research Literature ◽

Care Recipient ◽

Outcome Variable ◽

Caregiver Distress ◽

Negative Consequences ◽

Dementia Caregivers ◽

Five Factors ◽

Frail Elderly People

ABSTRACTBackground: Family care of frail elderly people has been linked to significant negative consequences for caregivers' mental health. Although outcome variables such as burden and depression have been widely analyzed in this population, guilt, an emotion frequently observed in caregivers, has not received sufficient attention in the research literature.Methods: Face-to-face interviews were carried out with 288 dementia caregivers. Guilt was measured using the Caregiver Guilt Questionnaire (CGQ).Results: Using principal components analysis, 22 items were retained and five factors were obtained which explained 59.25% of the variance. These factors were labeled: guilt about doing wrong by the care recipient, guilt about not rising to the occasion as caregivers, guilt about self-care, guilt about neglecting other relatives, and guilt about having negative feelings towards other people. Acceptable reliability indexes were found, and significant associations between the CGQ and its factors and the Zarit Burden Interview guilt factor were also found. Caregivers with higher scores on the CGQ also scored higher in depression, anxiety, frequency and appraisal of behavioral problems. Negative associations between the CGQ and its factors and frequency of/and satisfaction with leisure and social support were also found. Being female and caring for a parent were associated with higher scores on the CGQ.Conclusions: Feelings of guilt are significantly related to caregiver distress. The CGQ may be a useful measure for acknowledging feelings of guilt in caregivers; moreover, it can be used as an outcome variable for psychoeducational interventions aimed at reducing caregiver distress.

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Abstract P091: Early Life Stressors and Adult Cardiovascular Health in the REasons for Geographic and Racial Differences in Stroke (REGARDS) Study

Circulation ◽

10.1161/circ.137.suppl_1.p091 ◽

2018 ◽

Vol 137 (suppl_1) ◽

Author(s):

Virginia J Howard ◽

Leann Long ◽

Aleena Bennett ◽

Leslie A McClure ◽

Dawn O Kleindorfer ◽

...

Keyword(s):

Family Violence ◽

Racial Differences ◽

Early Life ◽

Cardiovascular Health ◽

Population Based ◽

Life Stressors ◽

Behavioral Risk ◽

Serious Illness ◽

Black And White ◽

Regards Study

Introduction: Prior research suggests early life stressors (ELS) influence development of cardiovascular (CV) risk over the lifecourse, but few national studies have evaluated this. We examined the association of ELS with adult CV defined by Life’s Simple 7 (LS7) score within a national US population-based cohort. Methods: We used data on 7,469 REGARDS participants (black and white adults, aged > 45 in 2003-2007), with clinical and behavioral risk factor data from questionnaires and direct measurement. Levels of LS7 components (blood pressure, total cholesterol, fasting glucose, physical activity, smoking, diet, body mass index) were coded as poor (0 points), intermediate (1 point) or ideal (2 points); the primary outcome, LS7 score, was the sum of the components. In 2012-2013, 7 ELS (death of parent, parents separated/divorced, family serious illness, witnessed family violence, family substance abuse, parent’s loss of job and parent incarcerated) were retrospectively assessed by mail questionnaire to active participants. Linear regression was used to characterize the relationship between each ELS and LS7 after adjustment for demographics and region of birth. Mediation by adult income and education was examined. Results: ELS were common, ranging from 3% for parent incarcerated to 29% for family serious illness. Lower LS7 was associated with each ELS, with significant association with witnessing family violence (-0.15; 95% CI: -0.29 to -0.02) (see figure.) Additional adjustment for adult education partially attenuated the effect estimates for witnessed family violence by 20.6% (95% CI: 2.0%, 39.1%); adjustment for adult income and education mediated the non-significant estimates for parental death, family illness and separation/divorce. Conclusions: Exposure to ELS was associated worse adult cardiovascular health; these associations were partially but not fully mediated by adult socioeconomic status. Further work is needed in categorization of ELS and examination of pathways underlying the associations.

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Helping caregivers of persons with dementia: which interventions work and how large are their effects?

International Psychogeriatrics ◽

10.1017/s1041610206003462 ◽

2006 ◽

Vol 18 (4) ◽

pp. 577-595 ◽

Cited By ~ 478

Author(s):

Martin Pinquart ◽

Silvia Sörensen

Keyword(s):

Behavioral Therapy ◽

Meta Analysis ◽

Well Being ◽

Care Recipient ◽

Subjective Well Being ◽

Dementia Caregivers ◽

Domain Specific ◽

People With Dementia ◽

The Individual ◽

Multicomponent Interventions

Background: In recent years, many different forms of interventions for caregivers of people with dementia have been developed. However, their results have been, in part, inconclusive.Methods: Meta-analysis was used to integrate the results of 127 intervention studies with dementia caregivers published or presented between 1982 and 2005.Results: Interventions had, on average, significant but small effects on burden, depression, subjective well-being, ability/knowledge and symptoms of care recipient. Only multicomponent interventions reduced the risk for institu-tionalization. Psychoeducational interventions that require active participation of caregivers had the broadest effects. Effects of cognitive-behavioral therapy, support, counseling, daycare, training of care recipient, and multicomponent interventions were domain specific. The effect sizes varied by study chara-cteristics, such as caregiver gender and year of publication.Conclusions: Because most interventions have domain-specific outcomes, clinicians must tailor interventions according to the specific needs of the individual caregivers. Although more recent interventions showed stronger effects, there is room for further improvements in interventions.

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Surviving and Thriving: Qualitative Results from a Multi-Year, Multidimensional Intervention to Promote Well-Being among Caregivers of Adults with Dementia

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18094755 ◽

2021 ◽

Vol 18 (9) ◽

pp. 4755

Author(s):

Meara H. Faw ◽

India Luxton ◽

Jennifer E. Cross ◽

Deana Davalos

Keyword(s):

Positive Emotions ◽

Well Being ◽

Relationship Building ◽

Care Recipient ◽

Dementia Caregivers ◽

Multiple Dimensions ◽

Personal Dignity ◽

Engagement Interventions ◽

Phenomenological Perspective ◽

Arts Engagement

(1) Introduction: Caring for an adult with dementia is both challenging and rewarding. Research indicates that community-based, social support, and/or arts engagement interventions can play a key role in ameliorating the negative outcomes associated with caregiving while enhancing its more positive attributes. This study explores the psychosocial outcomes experienced by dementia caregivers who participated in a multi-year, multidimensional intervention aimed at promoting caregiver and care recipient well-being. This intervention included bringing caregivers and people with Alzheimer’s disease or related dementias (ADRD) to local symphony performances, hosting a social reception prior to the performance, and assessing the outcomes of participation for both caregiver and the care recipient. (2) Materials, Methods, and Analysis: Qualitative data from participant phone interviews (n = 55) as well as focus groups are analyzed using thematic analysis from a phenomenological perspective. (3) Results: Across three years of participation, caregivers reported three main program benefits: relationship building (both with other participants as well as within the broader community); restored humanity (experiencing a greater sense of personal dignity and momentary return to normalcy), and positivity (experiencing positive emotions during the program). (4) Discussion: These findings point to the value of creating caregiver programming that brings together multiple dimensions of successful interventions in order to enhance caregiver experiences and positive intervention outcomes.

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Abstract P281: Medication Adherence and Stroke/TIA Risk in Treated Hypertensives: Results from the REasons for Geographic and Racial Differences in Stroke (REGARDS) Study

Circulation ◽

10.1161/circ.125.suppl_10.ap281 ◽

2012 ◽

Vol 125 (suppl_10) ◽

Author(s):

Doyle M Cummings ◽

Abraham J Letter ◽

George Howard ◽

Virginia J Howard ◽

Monika Safford ◽

...

Keyword(s):

Medication Adherence ◽

Racial Differences ◽

Population Based ◽

Hazard Ratio ◽

Logistic Regression Models ◽

Adherence Score ◽

Increased Risk ◽

Regards Study ◽

Ischemic Attack ◽

Perfect Adherence

Background: Low medication adherence in treated hypertensives is an important modifiable barrier to achieving blood pressure (BP) control. The contribution of poor medication adherence to adverse cardiovascular outcomes such as stroke and transient ischemic attack (TIA) relative to other cerebrovascular risk factors is less well understood. We therefore examined the relationship between medication adherence and both adequate BP control (< 140/90 mmHg) and stroke/TIA incidence in treated hypertensive subjects (n = 15,071 subjects free of stroke/TIA at baseline; 51% black; 57% living in the Stroke Belt) in REGARDS, a population-based cohort study. Methods: BP was measured in the subject’s home by a trained health professional following a standardized protocol. Medication adherence was measured at baseline (4-item validated Morisky scale: 0 = perfect adherence, 4 = lowest adherence). Participants were contacted bi-annually by telephone for a median follow-up time of 5 years and self-reported stroke or TIA events were adjudicated by medical record review. We used logistic regression models to examine the association between medication adherence and BP control and Cox modeling to evaluate the effect of adherence on stroke/TIA risk, examining the mediating effects of systolic BP. Results: Perfect medication adherence (score = 0) was reported by 69% of subjects, 23% a score of 1, 5% a score of 2, and 3% a score of 3 or 4. Mean systolic BP varied from 130.8 ± 16.2 in those reporting perfect adherence (Morisky score of 0) to 137.8 ± 19.5 in those reporting low medication adherence (score of 3 or 4) (p for trend< 0.0001). Compared to a Morisky score of 0, each level of worsening medication adherence was associated with significant and increasing odds of inadequately controlled BP (≥ 140/90 mmHg) in fully adjusted models: score = 1, odds ratio (95% CI) = 1.19 (1.09 – 1.30); score = 2, 1.27 (1.08–1.49); score = 3 or 4, 2.21 (1.75 – 2.78). Compared to perfect adherence, low medication adherence was not independently associated with stroke [hazard ratio = 1.04 (95% CI: 0.51 – 2.12)] or stroke and/or TIA [hazard ratio = 0.81 (95% CI: 0.38 – 1.73)] after multivariable adjustment. However, in analyses with systolic BP as the mediating variable, low medication adherence was associated with an increased risk for stroke (hazard ratio = 1.08 (95% CI: 1.04 – 1.14) and for stroke and/or TIA [hazard ratio = 1.08 (95% CI: 1.03 – 1.12)] in fully adjusted models. Conclusion: These findings add further evidence that low medication adherence is strongly associated with poor BP control; and through BP, low adherence is also associated with an increased risk of stroke or TIA.

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How family dementia caregivers perceive benefits of a 4-week MIT mindfulness and guided imagery program: a pilot study

10.31231/osf.io/xh3e8 ◽

2019 ◽

Author(s):

Francis Yang ◽

Joseph Zamaria ◽

Stefana Morgan ◽

Eric Lin ◽

Andrew F. Leuchter ◽

...

Keyword(s):

Psychological Symptoms ◽

Pilot Trial ◽

Well Being ◽

Mental States ◽

Care Recipient ◽

Structured Interviews ◽

Active Components ◽

Post Intervention ◽

Dementia Caregivers ◽

Self Compassion

BackgroundFamily caregivers of patients with dementia experience high levels of interpersonal stress that often results in elevated anxiety, depression and negative impacts on social networks. Changes in behaviors and the structure of relationships with the care recipient (CR) and others in the social milieu challenge the caregivers’ ability to mentalize, or understand the links between mental states and behaviors. This study investigates the perceived benefits for family dementia caregivers of Mentalizing Imagery Therapy (MIT), which aims to improve balanced mentalizing of both self and others and reduce psychological symptoms. Methods11 family members who identified as the primary caregiver of a relative with dementia underwent a 4-week pilot trial of MIT and completed semi-structured interviews post-intervention to identify subjective benefits, putative psychological mediators and perceived active components. ResultsCaregivers reported improvements in general well-being, mood, anxiety, and sleep, and a majority stated the intervention helped with forming and maintaining healthier relationships. Some participants noted benefits extending to how they reacted to their social environment and perceived themselves more objectively from others’ perspectives. Specific elements of the intervention, including self-compassion, self-care, and the ability to reflect on emotionally arousing challenges, might have mediated these improvements. The combination of instructor, meditations, homework, group sessions, and educational sessions was well received by participants.ConclusionOur results show that family dementia caregivers described perceived salutary benefits of MIT on multiple domains of well-being. The self reports suggest MIT holds promise for reducing non-mentalizing patterns of thought, and facilitating improvements in balanced mentalization within the caregivers’ relationships. These results should be further extended in larger samples.

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Effects of Positive Thinking on Dementia Caregivers’ Burden and Care-Recipients’ Behavioral Problems

Western Journal of Nursing Research ◽

10.1177/0193945919861970 ◽

2019 ◽

Vol 42 (5) ◽

pp. 365-372

Author(s):

Abir K. Bekhet ◽

Mauricio Garnier-Villarreal

Keyword(s):

Behavioral Problems ◽

Family Members ◽

Well Being ◽

Positive Thinking ◽

Moderating Effects ◽

Dementia Caregivers ◽

Care Recipients ◽

Patient Dependency ◽

The Family ◽

The Relationship

Most dementia care is provided at home by family members. This caregiving places an additional burden on the family members, which can negatively impact their physical and psychological well-being. The caregivers’ burden can also contribute to behavioral problems in the care-recipients. The purpose of this study was to examine the mediating/moderating effects of positive thinking (PT) on the relationship between caregivers’ burden (embarrassment/anger, patient’s dependency, and self-criticism) and their care-recipients’ behavioral problems (memory, depression, and disruption) in a sample of 100 dementia caregivers. Results indicated that caregivers’ embarrassment, self-criticism, and perception of patient dependency predicts depression in care-recipients, and these relationships are moderated by PT. Results also indicated that as PT increases, the relationship between embarrassment and disruption goes down as well as does the relationship between self-criticism and depression. The study provided direction for the development of a PT training intervention to help caregivers to combat their burden.

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