An integrated model of psychosocial correlates of insomnia severity in family caregivers of people with dementia.

OBJECTIVES: Research has shown the relevance of stress and coping factors in explaining caregivers' insomnia symptoms. However, few attempts have been made to empirically test an integrative model for insomnia severity in family caregivers of people with dementia. The aim of this study was to test such a model, in which insomnia severity is proposed to be influenced by predisposing factors, precipitated by stressors, and perpetuated by behaviors to cope with these stressors. METHODS: 311 family caregivers of people with dementia were assessed for variables categorized as predisposing (e.g. female gender), precipitating (e.g. care-recipient's behavioral and psychological symptoms of dementia [BPSD]), and perpetuating factors (e.g. sleep aids). A theoretical model was developed and then statistically tested using structural equation modelling, analyzing the direct and indirect effects of the assessed variables on caregivers' insomnia severity. RESULTS: Distress, sleep aids, and experiential avoidance showed a direct association with insomnia severity. Female gender, younger age, cognitive fusion, leisure activities, dysfunctional thoughts, frequency and distress caused by care-recipient's BPSD showed indirect associations with insomnia severity. The model explained 22% of the variance of caregivers' insomnia severity. CONCLUSION: The results provide additional empirical support for the importance of predisposing, precipitating and perpetuating factors associated with caregivers' insomnia severity. The integrative model we propose may also be useful for developing interventions targeting insomnia symptoms in family dementia caregivers.

Associations Between Dysfunctional Thoughts, Leisure Activities, and IL-6 in Caregivers of Family Members With Dementia.

OBJECTIVE: Dementia caregiving is associated with negative physical health consequences, including inflammation processes. The objective of this study was to analyze the associations between dysfunctional thoughts, frequency of leisure activities, and interleukin 6 (IL-6) in a sample of dementia family caregivers. METHODS: One hundred forty dementia caregivers participated in this cross-sectional study. The relationships among caregivers' dysfunctional thoughts, leisure activities, and IL-6 were adjusted for demographic characteristics, stressors, and physical and mental health indicators in a linear regression analysis. RESULTS: Higher levels of dysfunctional thoughts ( t = -2.02, p = .045) were significantly associated with lower frequency of leisure activities. In turn, lower frequency of leisure activities was significantly associated with higher levels of IL-6 ( t = -2.03, p = .045). Dysfunctional thoughts were no longer significantly associated with IL-6 levels when both dysfunctional thoughts and leisure activities were included in the same model ( t = 1.78, p = .076). A significant indirect effect was found for the association between higher levels of dysfunctional thoughts and higher levels of IL-6 (standardized indirect effect = 0.036, bootstrap standard error = 0.026, 95% confidence interval = 0.0001-0.1000) through its association with fewer leisure activities. CONCLUSIONS: Our findings suggest that the direct effect of caregivers' dysfunctional thoughts on IL-6 may be mediated by the impact on caregivers' frequency of leisure activities. Results suggest that training caregivers in reducing dysfunctional thoughts to thereby increase leisure activities may be useful in reducing inflammation.

Family Carers of People with Dementia in Japan, Spain, and the UK: A Cross-Cultural Comparison of the Relationships between Experiential Avoidance, Cognitive Fusion, and Carer Depression.

Objective and research design This study investigated whether the relationship between experiential avoidance and carer depression is mediated by cognitive fusion using path analysis and whether this model differs between family carers from Japan, Spain, and the UK using multi-group path analysis. Results The whole sample model (N = 745) showed a good fit to the data. The direct effect of experiential avoidance on carer depression (ß = .10) and its indirect effect on carer depression through cognitive fusion (ß = .15) were significant. Examined variables accounted for 45% of the variance of depression. Multi-group path analysis confirmed the same pattern of indirect path across 3 countries, while the direct path was no longer significant in Spanish and UK samples.Conclusion These findings suggest that targeting cognitive fusion may be particularly critical in culturally diverse carers and pre-emptive efforts to reduce experiential avoidance using psychological techniques may be beneficial among family carers prone to cognitive fusion regardless of cultural differences.

Cognitive fusion and distress in family caregivers: the role of satisfaction with personal values.

Objectives: cognitive fusion (the tendency towards behavior that is overly regulated and influenced by cognition) and dissatisfaction with personal values are central processes of psychological inflexibility and are related to distress. Being cognitively fused may interfere with achieving satisfaction from personal values. This study analyzed the role of satisfaction with the value of caregiving and other personal values (e.g. personal growth) in the relationship between cognitive fusion and caregivers' distress.Method: a total of 287 dementia family caregivers participated in this quantitative study carried out in Madrid, Spain, from January 2016 to February 2020. We measured sociodemographic and stressor variables, cognitive fusion, caregivers' satisfaction with values and depressive and anxiety symptoms. The indirect effect of cognitive fusion on distress through caregivers' satisfaction with caregiving value and with other personal values was tested. Four hierarchical regression models were analyzed: the role of satisfaction with the caregiving value in the association between cognitive fusion and depressive (Model 1a) and anxiety (Model 1b) symptoms; and the role of satisfaction with other personal values in the association between cognitive fusion and depressive (Model 2a) and anxiety (Model 2b) symptoms.Results: the results showed an indirect effect of cognitive fusion on both depressive and anxiety symptoms only through satisfaction with other personal values. Those reporting higher cognitive fusion reported lower satisfaction with other personal values, and this association was related to higher scores in depressive and anxiety symptoms (Models 2a and 2b).Conclusion: cognitive fusion could be a variable that interferes in obtaining satisfaction from personal values, something that increases caregivers' distress.

Family caregivers of people with dementia in the context of the sociocultural stress and coping model: An examination of gender differences.

The study assessed gender differences in the associations between familism dimensions, dysfunctional thoughts, and resource and outcome variables in 190 Spanish dementia family caregivers. A theoretical model was tested through path analysis, obtaining an excellent fit of the model to the data. Higher scores in the familial obligations dimension were associated with lower self-efficacy for self-care and obtaining respite and leisure frequency, and higher anxious and depressive feelings, in female caregivers only. Significant between-gender differences were obtained, suggesting that female caregivers holding strong familistic values are more vulnerable to the negative consequences of caregiving compared to male caregivers.

Longitudinal Correlates of Depressive Symptoms and Positive and Negative Affects in Family Caregivers of People With Dementia.

OBJECTIVE: Caring for a relative with dementia is considered a chronically stressful role associated with negative consequences for psychological health such as higher levels of depression. However, the subjective experience of depressive symptomatology is complex as it relates to two unique domains: positive affect (PA) and negative affect (NA). The objective of this study was to analyze, through a longitudinal design, the associations of caregivers' cognitive (avoidance coping, personal mastery, and coping self-efficacy) and behavioral (frequency of pleasant events) coping strategies with depressive symptoms, PA, and NA. METHODS: A total of 111 caregivers of a spouse with dementia participated in this study. They were assessed yearly across 5 years. Mixed model regression analyses were conducted separately for depressive symptoms, PA, and NA, analyzing within and between-person associations of caregivers' age, gender, role overload, sleep quality, and coping variables previously mentioned. RESULTS: The results showed that different coping strategies were associated with different components of depressive symptomatology. While avoidant coping was associated with NA and depressive symptoms but not PA at both within- and between-person levels, frequency of pleasant events was associated only with NA and depressive symptoms at the within-person level, showing no effect at the between-person level. Personal mastery and coping self-efficacy were found to be more transversal variables, being associated with most of the mood outcomes in both within and between-person effects. CONCLUSION: Findings support the concept of depressive mood as a complex construct and highlights the importance of analyzing different coping strategies when trying to comprehend the caregiving stress process.

Medical conditions and depressive symptoms: A study of kinship profiles in dementia caregivers.

OBJECTIVE: To analyze the association between diverse medical conditions and depressive symptoms in different profiles of dementia caregivers based on sex and kinship (wives, husbands, daughters, and sons). METHODS: Individual interviews were conducted with 338 dementia family caregivers. Depressive symptoms were measured with the Spanish version of the Center for Epidemiologic Studies-Depression Scale. Medical conditions encompassed the following physical diseases: high cholesterol, osteoarthritis, hypertension, diabetes, cancer, and cardiovascular, brain, kidney, liver, and stomach diseases.Logistic regression analyses were carried out to identify determinants associated to thepresenceof depressive symptoms. RESULTS: High cholesterol was the most frequent disease among caregivers.Significant differences among groups were found in depressive symptoms: between wives (50.60%) and husbands (28.40%),(p = 0.033), and between daughters (57.00%) and husbands (p = 0.001). Half of the sonsreported thepresenceof depressive symptoms. In daughters, depressive symptomatology was significantly more likely whether they presented a worse reaction to disruptive behaviors, a poor assessment of global deterioration of care recipient, and less perceived health status. Furthermore, daughters were 1.94 times more likely to experience depressive symptoms if they presented medical conditions (p = 0.017). CONCLUSIONS: Daughter caregivers that have depressive and physical diseases may be an especially vulnerable subgroup of caregivers that may not be the ideal population to provide care. Access to high-quality, evidence-based therapies focused on improving caregivers' physical health could have a positiveeffecton thepresenceof depressive symptoms, particularly in the case of daughter caregivers.

Associations between pleasant events, activity restriction, stressors, and blood pressure in caregivers of persons with dementia.

OBJECTIVES: Caring for a relative with dementia is associated with adverse consequences for cardiovascular health. Cognitive and behavioral factors, such as high perceived activity restriction and low frequency of pleasant events have been found to be associated with higher levels of blood pressure, but the role these variables play in the stress and coping process remains understudied. The objective of this study is to analyze the associations between behavioral and psychological symptoms of dementia, activity restriction, frequency of pleasant events, and mean arterial pressure. DESIGN: Face-to-face interviews and cross-sectional analyses. SETTING: Social services, healthcare centers, and adult day services of Comunidad de Madrid, Spain. PARTICIPANTS: One hundred and two family caregivers of a spouse or parent with dementia. MEASUREMENTS: Apart from various sociodemographic and health-related variables, behavioral and psychological symptoms of dementia, activity restriction, and frequency of leisure activities were assessed. In addition, measurement of blood pressure levels was conducted through an electronic sphygmomanometer. RESULTS: The obtained model suggests that there is a significant indirect association between behavioral and psychological symptoms of dementia and mean arterial pressure through activity restriction and frequency of pleasant events. CONCLUSIONS: The findings of this study provide preliminary support for a potential indirect effect between behavioral and psychological symptoms of dementia and blood pressure, through the effects of behavioral and psychological symptoms of dementia on the caregivers' levels of activity restriction and frequency of pleasant activities. Our manuscript provides additional support for the pleasant events and activity restriction model (Mausbach et al., 2011; Chattillion et al., 2013), by highlighting the importance of considering caregiving stressors as a source of caregivers' activity restriction in the theoretical framework of the model.

Stress, Insomnia, and Leisure in Dementia Family Caregivers. Correlates with Distress during the COVID-19 Pandemic.

The COVID-19 pandemic added a new stress source for caregivers. Many aspects influence the potential depressive or anxiety symptomatology in caregivers. This study explored the association among COVID-19 related stressors, insomnia, leisure, and caregivers' depression and anxiety. 101 family caregivers of people with dementia were asked about COVID-19 related stressors, insomnia, leisure, depression and anxiety symptoms. Four regression models with caregivers' depression and anxiety symptoms as dependent variables were tested. Four potential mediation models were investigated. Two of them had insomnia as the independent variable and leisure as a mediator, and the other two had leisure as the independent variable and insomnia as a mediator. Regression models accounted for 48% and 40.6% of the variance in depressive and anxiety symptoms, respectively. The four mediator models were statistically significant. Findings suggest two potential mechanisms affecting caregivers' distress during the pandemic. Insomnia and leisure significantly contributed to explain caregivers' anxiety and depressive symptoms, even after controlling for COVID-19 related stressors. Provision of resources to increase the chances of caregivers engaging in leisure activities, alongside a reduction of barriers potentially limiting good sleep, may contribute significantly to improving the depression and anxiety symptoms of family caregivers.

Guilt Focused Intervention for Family Caregivers. Preliminary Results of a Randomized Clinical Trial.

OBJECTIVES: A pilot randomized controlled trial study was conducted for testing the efficacy of a novel Guilt Focused Intervention (GFI), that was compared with a Cognitive Behavioral Intervention (CBI) for caregivers of people with dementia with high levels of guilt and distress. METHODS: Participants were 42 caregivers who were randomized assigned to the intervention conditions. RESULTS: Participants in the GFI showed significant reductions in depression, anxiety, and guilt at posttreatment and follow-up. Participants in the CBI presented reductions in anxiety and guilt at posttreatment and follow-up. Clinically significant change for guilt was found in 62.5% in the GFI and 9.09% in the CBI group at posttreatment. At follow-up, 58.33% in GFI and 12.5% in the CBI group were recovered. CONCLUSIONS: The preliminary results of this pilot study suggest that caregivers with significant levels of guilt and distress might benefit from an intervention specifically designed to target guilt feelings. CLINICAL IMPLICATIONS: A novel and initial intervention approach specifically designed for targeting caregivers' feelings of guilt might have the potential to reduce caregiver's emotional distress.

Caring for Relatives with Dementia in Times of COVID-19: Impact on Caregivers and Care-recipients.

OBJECTIVES: To analyze caregivers' perceived impact of the pandemic in their mental health and the well-being of the care-recipients. METHODS: Caregivers (N = 88) were asked if they had COVID-19 and about their perceptions of change of care-recipients' health conditions as well as whether their own mental health, conflicts with care-recipients and other relatives, thoughts of giving up caregiving, and feelings of coping well with the situation. RESULTS: A large percentage of caregivers perceived a worsening of care-recipients' symptoms and of their own negative emotions, an increase in the number of conflicts and thoughts of needing to give up caregiving. Having had COVID-19 and reporting higher levels of distress as well as giving up caregiving were related to perceived worsening in care-recipients well-being. Perceived increases were mainly reported by younger caregivers, those who perceived to have not coped well, and those reporting an increase in conflicts. Some caregivers perceived an increase in positive emotions. CONCLUSIONS: The pandemic has a negative impact on caregivers' perceptions about the course of their own emotions and care-recipients' well-being. CLINICAL IMPLICATIONS: Interventions are needed to train caregivers in strategies to cope with the sources of stress caused by the pandemic and to promote social support.

Guilt for perceiving oneself as a burden in healthy older adults. Associated factors.

METHODS: Participants were 317 community-dwelling people over 60 years without cognitive or functional limitations. A path model that explores the role of self-perceived burden in the relationship between negative self-perception of aging, perceived control, depressive symptoms and guilt associated with self-perception as a burden was analyzed. RESULTS: The model presented excellent fit to the data, explaining 41% of the depressive symptomatology and 45% of guilt for perceiving oneself as a burden. Negative self-perceptions of aging, lower sense of control, and a perception of being a burden were significantly associated with depressive symptoms and guilt for perceiving oneself as a burden. DISCUSSION: This study documents potential correlates of psychological distress in older adults with no explicit physical or cognitive problems, suggesting paths through which feelings of guilt for perceiving oneself as a burden may be reported by this population.

Personal values profiles in dementia family caregivers: their association with ambivalent feelings and anxious and depressive symptoms.

OBJECTIVE: Culture-related variables, such as personal values, have been suggested as important in stress processes, such as family caregiving of people with dementia. Personal values may be categorized into two dimensions: family and own personal values. Drawing upon the Sociocultural Stress and Coping model, the objective of this study is to analyze differences between caregivers depending on their values profiles. METHOD: Participants were 333 family caregivers of a spouse or a parent with dementia. Caregivers chose their two most important values, apart from caregiving, from a list of eight family-related and non-family-related values (own values). Therefore, three values profiles were possible: Family-values profile (FVP: the two values are family related), Mixed-values profile (MVP: one family related value and one own value), and Own-values profile (OVP: two own values were selected). In addition to values, sociodemographic variables, commitment and satisfaction with caregiving value and with chosen values, ambivalent feelings, and anxiety and depression symptomatology were assessed. ANOVA analyses were conducted. RESULTS: The analyses suggest that caregivers in the FVP had lower levels of anxiety and ambivalent feelings and a higher commitment to and satisfaction with their chosen values than the other profiles. No differences were found for commitment and satisfaction with the caregiving value. CONCLUSION: Caregivers' value profiles seem to play an important role in the effects of stress over psychological health. Possible explanations of these effects about potential role conflicts and a higher commitment to values are discussed.

Validation of the Guilt associated with Self-Perception as a Burden Scale (G-SPBS).

BACKGROUND: One of the main health-related worries for older adults is becoming dependent. Even healthy older adults may worry about becoming dependent, generating guilt feelings due to the anticipation of future needs that others must solve. The guilt associated with self-perception as a burden has not been studied in older adults, and there is no instrument available to measure these feelings. AIMS: To adapt the Self-Perceived Burden Scale (SPBS; Cousineau et al., 2003) for the assessment of feelings of guilt for perceiving oneself as a burden for the family in older adults without explicit functional or cognitive impairment. METHOD: Participants were 298 older adults living independently in the community. Participants completed the assessment protocol, which included measures of guilt associated with self-perception as a burden, depressive and anxious symptomatology, self-perceived burden, and sociodemographic information. RESULTS: Results from exploratory, parallel and confirmatory factor analyses suggest that the scale, named Guilt associated with Self-Perception as a Burden Scale (G-SPBS), has a unidimensional structure, explaining 57.04% of the variance of guilt. Good reliability was found (Cronbach's alpha = .94). The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology. DISCUSSION: These findings suggest that the G-SPBS shows good psychometric properties which endorse its use with healthy community older adults. Also, guilt associated with perceiving oneself as a burden seems to be a relevant variable that can contribute to improving our understanding of psychological distress in older adults.

Emotion regulation processes as mediators of the impact of past life events on older adults' psychological distress.

OBJECTIVE: Although it is known that certain emotion regulation processes produce a buffering effect on the relationship between life events and well-being, this issue has been poorly studied in the elderly population. Thus, the aim of the present study is to test and confirm a comprehensive model of the impact that past life events have on older adults' psychological distress, exploring the possible mediating roles of emotion regulation processes. These include rumination, experiential avoidance, and personal growth. METHODS: In this cross-sectional study, 387 people over 60 years old residing in the community were assessed on life events, physical functioning, emotion regulation variables, psychological well-being, as well as symptoms of anxiety and depression. RESULTS: The structural model tested achieved a satisfactory fit to the data, explaining 73% of the variance of older adults' psychological distress. In addition, the main results suggest possible mediation effects of both the physical functioning and the emotional variables: rumination, experiential avoidance, and personal growth in the face of hardship. CONCLUSIONS: These findings confirm the importance of emotion regulation processes in the final stages of life. They reveal the various adaptive and maladaptive mechanisms that underlie the relationship between life events and psychological distress. The findings suggest - both in the explanatory models of psychological well-being and in psychotherapeutic interventions - the importance of emotion regulation in the elderly population's health.

Measuring familism in dementia family caregivers: the revised familism scale.

Objectives: Familism is a cultural value that has been shown to be important for understanding the dementia caregiving process. The aim of this study is to analyze the psychometric properties of the Revised Familism Scale (RFS).Method: Face-to-face assessments were done with 199 dementia family caregivers. Exploratory factor analysis, discriminant validity, and reliability analyses of the RFS were carried out.Results: The results suggest that the RFS has good psychometric properties and is composed of three factors: "Familial interconnectedness", "Familial obligations", and "Extended family support".Conclusion: The RFS seems to be a reliable measure of familism, a multidimensional construct measuring a relevant cultural value for dementia family caregivers.

The Relationship Between Circulating Interleukin-6 Levels and Future Health Service Use in Dementia Caregivers.

OBJECTIVE: Older adults are among the most frequent users of emergency departments (EDs). Nonspecific symptoms, such as fatigue and widespread pain, are among the most common symptoms in patients admitted at the ED. Interleukin 6 (IL-6) and tumor necrosis factor α (TNF-α) are inflammation biomarkers associated with chronic stress (i.e., dementia caregiving) and nonspecific symptoms. This study aimed to determine whether IL-6 and TNF-α were prospectively associated with ED risk in dementia caregivers (CGs). METHODS: Participants were 85 dementia CGs, who reported during three assessments (3, 9, and 15 months after enrollment) if they had visited an ED for any reason. Cox proportional hazards models were used to examine the relations between resting circulating levels of IL-6 and TNF-α obtained at enrollment and subsequent risk for an ED visit, adjusting for age, sex, use of ED 1 month before enrollment, physical and mental health well-being, body mass index, and CG demands. RESULTS: (log) IL-6 significantly predicted ED visits during the 15-month follow-up (B = 1.96, SE = 0.82, p = .017). For every (log) picogram per milliliter increase in IL-6, the risk of visiting an ED was 7.10 times greater. TNF-α was not associated with subsequent ED visits. Exploratory analyses suggested that CGs with levels of IL-6 above the 80th percentile and experiencing high CG demands were at highest risk of an ED visit. CONCLUSIONS: IL-6 levels and CG demands may be useful for predicting vulnerability for future ED visits. Although further studies should be conducted to replicate and extend these findings, interventions that successfully modify inflammation markers, including the underlying pathophysiology related to stress and/or comorbid illnesses, may be useful in preventing costly and detrimental outcomes in this population.

Stress and Blood Pressure in Dementia Caregivers: The Moderator Role of Mindfulness.

Objective: Dementia caregiving has been described as a chronically stressful situation with adverse cardiovascular effects. Psychological resources such as mindfulness may reduce the impact of stress on caregivers' cardiovascular health. The objective of this study was to analyze the moderating effect of trait mindfulness on the relationship between frequency of disruptive behaviors of the care recipient and blood pressure (BP) in dementia caregivers. Method: Participants were 110 dementia family caregivers. Two hierarchical regressions (for systolic and diastolic BP) were conducted to analyze whether mindfulness moderates the relationship between disruptive behaviors and BP after controlling for known predictors of cardiovascular outcomes. Results: A significant moderator effect of mindfulness was found between the frequency of disruptive behaviors and diastolic BP (ß = -.195, p < .05). Among those caregivers reporting low levels of mindfulness, the relationship between frequency of disruptive behaviors and diastolic BP was relatively stronger than among those reporting high mindfulness levels. Conclusions: The results suggest that a high level of trait mindfulness may have protective effect on BP when caregivers face high levels of stress. Clinical Implications: Mindfulness seems to be an important variable with potential for buffering the effects of caregiving stressors on caregivers' blood pressure.

Ambivalence and guilt feelings: Two relevant variables for understanding caregivers' depressive symptomatology.

Providing care for a relative with dementia is considered to be a chronic stressor that has been linked to negative mental health consequences for caregivers. A theoretical model was developed and tested to assess the degree to which ambivalence and guilt feelings contribute to caregivers' depressive symptomatology. Participants included 212 dementia family caregivers. In addition to ambivalence and guilt feelings, sociodemographic characteristics, behavioural and psychological symptoms of dementia, and depressive symptomatology were assessed. Hypotheses derived from the stress and coping model were tested using path analysis. The analysed model showed an excellent fit to the data. In total, 35% of the variance in depressive symptomatology was explained by the assessed variables. Although significant correlations were obtained between frequency and appraisal of behavioural and psychological symptoms of dementia and depression, the obtained model suggests that this effect was mediated through ambivalence. In addition, ambivalence had an indirect effect on depression. The association of ambivalence with depression was explained through feelings of guilt; that is, respondents who reported ambivalent feelings were more likely to experience guilt, leading in turn to greater depressive symptomatology. The findings suggest that dementia caregivers' ambivalence and guilt feelings are relevant for understanding their depressive symptomatology. These factors should be addressed in psychological interventions with caregivers.

Physical limitations and loneliness: The role of guilt related to self-perception as a burden.

BACKGROUND: Limitations in performing physical activities have been associated with greater loneliness in older adults. This association could be moderated by maladaptive social cognition or feelings, such as guilt related to perceiving oneself as a burden. This study analyzes the effect of guilt related to self-perception as a burden on the relationship between physical limitations and loneliness in older adults. METHODS: Participants were 190 community-dwelling people aged over 60 years who did not show cognitive or functional limitations in daily life activities. We used linear regression to test the influence of guilt related to self-perception as a burden on the association between physical limitations and loneliness. RESULTS: The interaction between physical limitations and guilt related to self-perception as a burden was found to be significant in the explanation of loneliness, explaining 18.10% of the variance. Specifically, the relationship between physical limitations and loneliness was stronger when levels of guilt related to self-perception as a burden were high or medium than when these levels were low. CONCLUSIONS: The findings suggest that feelings of loneliness are more frequent in people who report more physical limitations and, at the same time, report guilt for perceiving themselves as a burden. Guilt related to perceiving oneself as a burden seems to be a relevant modulator variable for understanding the effects of physical limitations on loneliness.