Reduction of caregiver burden in Alzheimer's disease by treatment with galantamine

Alzheimer's disease is a progressive condition characterized by a loss of cognition, altered behavior, and a loss of functional ability, such as bathing, dressing, toileting, and organizing finances. Family and friends provide nearly three quarters of all care for patients with Alzheimer's disease. This informal care results in significant burden to caregivers. Caregiver burden is the set of physical, psychological or emotional, social, and financial problems that family members may experience when caring for impaired older adults. Caregivers of Alzheimer's disease patients report higher rates of physical symptoms, mortality, depression, and fatigue, as well as adverse effects on employment compared with those who are not caregivers for Alzheimer's disease patients. In many cases, the same family members are responsible for both out-of-pocket expenditures and caregiving duties. For this article, a MEDLINE search using the key words "caregiver and Alzheimer's disease" and "cost and Alzheimer's disease" was performed. The purpose of this article is to review the literature on caregiver burden, the components of caregiver burden, effects of caregiving on the health of caregivers, the cost of Alzheimer's disease on the caregiver and society, and the benefits attainable with treatment.     

Health-Related Quality of Life in a National Sample of Caregivers: Findings from the Behavioral Risk Factor Surveillance System

Purpose Recent national public health agendas, such as Healthy People 2010, call for improved public health surveillance and health promotion programs for people with disabilities and their caregivers. The goal of this study was to understand the public health impact of caregiving on health-related quality of life (HRQoL) using population-level data. Design & Methods A cross-sectional study design was used. 184,450 adults surveyed during the 2000 national Behavioral Risk Factor Surveillance System survey formed the sample. Binary logistic regression models ascertained differences between caregivers and non-caregivers in reporting reduced (“fair” or “poor”) health. Ordinary least squares regression (OLS) and multinomial logistic regression models examined the influence of caregiving status on HRQoL, measured as categories of healthy days reported in the last 30 days and the number of days reported as physical and mental health not good in the last 30 days. Results Sixteen percent (16%) of the survey respondents were caregivers. There was an interaction effect between caregiving status and age of the caregiver. In the fully adjusted models, caregivers <55 years old had a 35% increased risk of having fair or poor health (odds ratio [OR] = 1.35, 95% confidence interval [CI] 1.28, 1.43) as compared to non-caregivers in that age group, while caregivers 55 years and older had a 3% decreased risk in having fair or poor health (OR = 0.97, 95% confidence interval [CI] 0.92, 1.03) compared to non-caregivers of the same age. In the adjusted models that examined the association of caregiving and healthy days, younger caregivers similarly showed larger deficits in both mental and physical HRQoL compared to older caregivers. For example combining mental and physical days, caregivers <55 had 1.44 fewer healthy days (β = −1.44, standard error (SE) = 0.07), while caregivers 55+ had 0.55 fewer days *β = −0.55, standard error (SE) = 0.13 (compared to non-caregivers in their respective age groups). Implications With increasing population age and the projected increase in caregivers, it is important that we understand the social and public health burden of caregiving and begin to identify interventions to sustain the HRQoL of caregivers. We found that caregivers have a slight to modest decline in HRQoL compared to non-caregivers, and that caregiving affects the HRQoL of younger adults more than older adults. Further research at the population level as to the type and level of burden of caregiving is needed.     

Environmental stress, psychological stress and allostatic load

The mechanism by which chronic caregiving stress results in poor health is not well understood. The objective was to determine whether such a mechanism may be allostatic load, a novel concept specifying physiological systems that may suffer cumulative wear and tear following chronic stress, leading collectively to poor health. The study examines the association of allostatic load with environmental and psychological stress in the contexts of dementia caregiving and relinquishment of care, and is a 2-year longitudinal comparison of three groups: 80 new dementia spouse caregivers, 120 veteran caregivers, and 60 non-caregivers. Data comprised allostatic load markers and environmental and psychological stress measures. Cross-lagged analyses produced a statistically significant association between psychological stress and one allostatic load component (primary mediators). Psychological stress was a better predictor of primary mediators than environmental stress. Primary mediators rose with time for caregivers, but not for non-caregivers. A greater rise was evident for caregivers who had relinquished their role by the second year, although the level of psychological stress actually declined. Primary mediators are a key component of the relationship between allostatic load and prior stress. When allostatic load is treated as an outcome of stress, it is important to distinguish environmental and psychological stress.     

The four-factor model of depressive symptoms in dementia caregivers: a structural equation model of ethnic differences

Previous studies have suggested that 4 latent constructs (depressed affect, well-being, interpersonal problems, somatic symptoms) underlie the item responses on the Center for Epidemiological Studies Depression (CES-D) Scale. This instrument has been widely used in dementia caregiving research, but the fit of this multifactor model and the explanatory contributions of multifactor models have not been sufficiently examined for caregiving samples. The authors subjected CES-D data (N = 1,183) from the initial Resources for Enhancing Alzheimer's Caregiver Health Study to confirmatory factor analysis methods and found that the 4-factor model provided excellent fit to the observed data. Invariance analyses suggested only minimal item-loading differences across race subgroups and supported the validity of race comparisons on the latent factors. Significant race differences were found on 3 of the 4 latent factors both before and after controlling for demographic covariates. African Americans reported less depressed affect and better well-being than White caregivers, who reported better well-being and fewer interpersonal problems than Hispanic caregivers. These findings clarify and extend previous studies of race differences in depression among diverse samples of dementia caregivers.     

Endorsement of proactively aggressive caregiving strategies moderates the relation between caregiver mental health and potentially harmful caregiving behavior

This research tested the proposition that the oft-reported relation between caregiver mental health outcomes (i.e., resentment, depression) and potentially harmful caregiver behavior (PHB) would be mediated or moderated by caregiver endorsement of proactively aggressive caregiving strategies (PA). Caregiver resentment was the strongest predictor of PHB in the sample of 417 informal caregivers who resided with their care recipients; in fact, resentment mediated the impact of caregiver depression, thus suggesting that depressed affect was associated with PHB only if depressed caregivers resented their caregiving burdens. As predicted, caregiver endorsement of PA moderated the relation between resentment and PHB, such that links between these two constructs were strongest when caregivers were high in both resentment and PA. Endorsement of PA also mediated the relations between demographic or contextual variables (i.e., income, care recipient dementia) and PHB. Implications of these results for research and intervention are discussed.     

Positive aspects of caregiving and adaptation to bereavement

This study examined how positive aspects of caregiving affect adaptation to bereavement among older adults who cared for a family member with dementia. The sample consisted of 217 caregivers who were part of the Resources for Enhancing Alzheimer's Caregiver Health Study. Using pre- and postloss data, hierarchical regressions were carried out to examine the effects of positive aspects of caregiving (caregiving benefit) on postloss depression and grief. Findings show that preloss caregiving benefit was associated with higher levels of postloss depression and grief, even after controlling for caregiver demographic characteristics, contextual factors, and caregiving burden. This effect was particularly strong for the relation between benefit and grief. Results demonstrate the importance of studying both positive and negative aspects of caregiving and their relation to bereavement outcomes.     

What Is a Nonresponder? A Qualitative Analysis of Nonresponse to a Behavioral Intervention

This study used qualitative methods to understand reasons for treatment nonresponse following a behavioral intervention for family caregivers of people with dementia. Caregivers and interventionists completed semistructured interviews about their experience of the treatment after completing a course of Resources for Enhancing Alzheimer’s Caregiver Health in VA (REACH VA). Treatment response from the 22 caregivers who completed the 12-session treatment was assessed using pre- to posttreatment change scores on measures of depression and caregiver burden. Interviews from the 14 nonresponder caregiver/interventionist dyads (28 total) were analyzed qualitatively to identify caregiver factors that negatively impacted improvement in depression and caregiver burden, such as emotional processing difficulties, wanting more support than structure, and limited support/difficulty asking for help. Ways nonresponders benefited from REACH VA beyond improvement on self-report symptom measures were also identified and included learning to problem solve more effectively, feeling understood and supported by another, and taking a different perspective on caregiving. The benefits of using qualitative methods to assess the experience of treatment nonresponders and identify individuals who may benefit from additional treatment or a different approach are discussed.     

Positive aspects of caregiving as a moderator of treatment outcome over 12 months

The authors examined the influence of positive aspects of caregiving (PAC) as a moderator of treatment outcome across 12 months in 1 of the original sites of the Resources for Enhancing Alzheimer's Caregiver Health I project. They used multilevel random coefficients regression analysis to predict time-varying PAC, depression, behavioral bother, and daily care burden in Alzheimer's caregivers (N = 243; mean age = 60.89, SD = 14.19). They found that time-varying PAC was predicted by time-varying daily care burden. They also found significant effects of time-varying PAC for depression, behavioral bother, and daily care burden. Notably, a PAC x Phase x Treatment effect was found for daily care burden, such that individuals who endorsed less PAC benefited most from the intervention across 12 months. The tendency to positively appraise the caregiving experience (i.e., PAC) in response to chronic stressors such as Alzheimer's caregiving may affect individuals' responsiveness to, and benefit from, interventions, whereas only daily care burden affected the tendency to find enjoyment in caregiving across 12 months. Future intervention research should assess individual PAC in order to better tailor interventions to caregiving needs.     

Empathy in informal dementia caregivers and its relationship with depression,anxiety, and burden

Background/Objective: Recent interventions aim to heighten informal caregivers’ empathy levels assuming that this will lead to better well-being. However, previous studies have explored linear associations between empathy and aspects of well-being and yielded mixed results. We hypothesized that quadratic models may be more fitting to describe these relationships. Method: A cross-sectional study, with two groups (201 informal caregivers, and 187 non-caregivers) was conducted. Participants completed questionnaires on cognitive and affective empathy, and depression, anxiety, and caregiver burden. AN(C)OVA's and multiple hierarchical regression analyses including linear and quadratic terms were used to analyze the data. Results: For caregivers, there was a negative quadratic relationship between depression and cognitive empathy, and a positive linear relationship between anxiety and affective empathy, irrespective of sociodemographic characteristics. For non-caregivers, there were positive quadratic relationships between depression and cognitive and affective empathy, and between anxiety and affective empathy. The empathy levels did not differ between the groups. Conclusions: While caregivers and non-caregivers had the same amount of empathy, the relationships between empathy and depression and anxiety differed between the groups. Interventions for informal caregivers could aim to heighten cognitive empathy and to lower affective empathy to diminish depression and anxiety symptoms.     

Using Cognitive Mapping to Understand Problems Experienced by Family Caregivers of Persons with Severe Physical Disabilities

Individuals who provide ongoing care for family members who have a chronic disease or disability are likely to encounter a wide array of problems that can compromise their own health and their ability to function effectively in a caregiving role. Structured focus group meetings were conducted to elicit a comprehensive list of the problems that caregivers experienced during their first year of providing care to a person with a severe physical disability. A separate group of caregivers (N = 60) individually sorted problems into piles based on their similarity and assigned relative importance to each problem. The aggregated data were analyzed with multidimensional scaling and hierarchical cluster analysis. Results indicated that caregivers cognitively organize problems along three dimensions: I. Centeredness–caregiver versus patient-oriented; II. Relationship Demands–physical versus emotional; and III. Caregiver Burden–time versus emotional. Additionally, 6 clusters of substantively similar problems were identified and prioritized in terms of personal relevance: Basic Needs (lowest); Perceived Constraints; Caregiver Challenges; Patient Resentment; Patient Withdrawal; and Patient Intrapsychic Adjustment (highest). Further examination of the organization of problems identified by caregivers should provide important insights about the experience of caregivers and how more targeted interventions can be developed to address their specific needs.     

The longitudinal effects of early behavior problems in the dementia caregiving career

Using multiregional, 3-year data from early career dementia caregivers, this study determines how behavior problems that occur early in the caregiving career influence time to nursing home placement and change in burden and depression over time. A Cox proportional hazards model indicated that caregivers who managed frequent behavior problems earlier are more likely to institutionalize. After controlling for important time-varying covariates in a series of growth-curve models, caregivers who were faced with severe, early behavior problems reported greater increases in burden and depression over the 3-year study period. The findings suggest the need to consider experiences early in the dementia caregiving career when accounting for key longitudinal outcomes and also emphasize the importance of attrition when attempting to model the health implications of informal long-term care over time.     

Factors Impacting the Mental Health of the Caregivers of Children with Asthma in China: Effects of Family Socioeconomic Status,Symptoms Control,Proneness to Shame,and Family Functioning

Caregiver mental health is widely considered to be an important factor influencing children's asthma symptoms. The present study aimed to examine key factors that contribute to caregiver mental health in pediatric asthma with a Chinese sample. Two hundred participants reported their family socioeconomic status (SES), proneness to shame, asthma symptoms control of their child, family functioning, and their depression and anxiety symptoms. Results suggested that low family SES, low family functioning, and a high level of shame proneness were associated with high levels of anxiety and depression for caregivers. Family functioning mediated the effects of SES and shame on caregiver mental health and also moderated the effects of SES and shame on caregiver depression. This study highlights the importance of reducing experience of shame and enhancing family functioning in families affected by pediatric asthma.     

Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as “compound caregiving”, may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.     

The onset of dementia caregiving and its longitudinal implications

This study examined patterns of entry into the caregiving role and how onset influences outcomes pertinent to the caregiving process. Using 3-year longitudinal data, the present analysis classified dementia caregivers into 1 of 4 onset sequences: those whose entry into caregiving was defined by diagnosis, those who first recognized symptoms and then obtained a diagnosis, those caregivers who first recognized symptoms and then provided care, and those who provided care prior to diagnosis or recognition. Analyses revealed that respondents who experienced a less abrupt entry into caregiving were less likely to institutionalize their relatives and reported greater decreases in well-being. The findings point to the dynamic process that defines entry into caregiving and emphasize that how individuals assume caregiving roles have implications long after onset.     

PERCEIVED FREQUENCY OF ROLE CONFLICT AND RELATIONSHIP QUALITY FOR CAREGIVING DAUGHTERS

A role-conflict approach was employed to explore the impact of perceived frequency of conflict between caregiving and other obligations on the quality of relationships between daughters and their care-receiving mothers. Frequency of conflict between caregiving and responsibilities as a wife, mother, and paid and unpaid worker was assessed. Daughters reported relatively infrequent conflict between caregiving and other obligations. A multiple regression analysis revealed that daughters who reported frequent conflict between their obligations as caregivers and their obligations as wives had poorer relationships with their mothers. The findings emphasize the importance of a supportive spouse for married caregivers.     

Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease caused by the degeneration of motor neurons. The burden for ALS caregivers is quite high. There are still few studies that have investigated the emotional impact of ALS care. We conducted a cross-sectional study among 40 ALS caregivers, assessing general worries, burden of care, depression, anxiety, perception of social support, and patients' severity of disease. Caregiver burden, depression, and anxiety were positively related with each other, and all these variables had a negative relation with social support. Patient's loss of physical functions was positively related with caregiver burden, anxiety, and somatic expression of depression. Caregivers expressed worries for their own health conditions. Given these results, we consider the hypothesis of an emotional-somatic impact of ALS care. The implications and limitations are discussed.     

Depression and quality of informal care: a longitudinal investigation of caregiving stressors

This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver depression. In turn, increased caregiver depression and decreased caregiver respectful behavior predicted increases in potentially harmful behavior. These results extend previous cross-sectional findings and indicate that changes in caregiving stressors, caregiver depression, and caregiver respect over time may signal that intervention is warranted in order to forestall or prevent poor quality of care.     

Self-Efficacy as a Mediator of Caregiver Coping: Development and Testing of an Assessment Model

Development and utilization of two self-efficacy measures thought to be relevant to stressed family caregivers, Caregiver Self-Care Self-Efficacy and Caregiver Problem-Solving Self-Efficacy, are described. Data obtained in the context of a psychoeducational intervention program are available for 217 caregivers of frail and/or cognitively impaired elders. Analyses of psychometric properties of the efficacy measures demonstrate good internal consistency and test-retest reliability for both measures. In addition, both measures of self-efficacy are related to depression as measured by the Beck Depression Inventory and caregiver distress as measured by the Zarit Burden Scale. Problem-Solving Self-efficacy also is related to subjective caregiver burden as measured by Zarit's Memory and Behavior Problem Checklist. Results are promising in terms of the utility of the measure and the application of self-efficacy theory to the caregiving situation. Limitations of these measures are discussed and suggestions made for improved second-generation self-efficacy scales.     

Longitudinal impact of interhousehold caregiving on adult children's mental health

The wear-and-tear hypothesis of caregiving (the longer care provided, the more psychological strain on caregivers) was examined using panel survey data from 112 adult children providing interhousehold care to an impaired elderly parent. Measures included subjective caregiving stress and perceived caregiving effectiveness ("wear") and depression and affect balance ("tear"). Contrary to the hypothesis, data revealed variability in children's adaptation to caregiving, improvement rather than deterioration being the norm. In a recursive path model, both subjective stress and perceived effectiveness were significant predictors of changes in depression. Depression was not significantly related to duration of caregiving. Discussion suggests that future researchers consider other types of caregivers and care settings, factors predicting variability in caregivers' adaptation over time, and changes as well as stability in care arrangements.