The role of hyperarousal for understanding the associations between sleep problems and emotional symptoms in family caregivers of people with dementia. A network analysis approach.

Caregiving for a family member with dementia is a stressful situation that has been associated with symptoms of depression, anxiety, and insomnia. Several models have highlighted the role of hyperarousal for understanding sleep disorders; however, there is little evidence about how insomnia, depression, and anxiety are linked together. Network analysis could help to explore the mechanisms underlying the associations between these disorders. A total of 368 community-dwelling family caregivers of a person with dementia took part in the study. The depression-anxiety-sleep symptoms network was composed of 26 items using the R package qgraph to estimate and visualise the network. The results showed that the strongest symptoms in the network were shakiness, tension, restlessness, nervousness, and restless sleep. Tension was the symptom with the most predictive power, restless sleep was the most important shortcut node in the connection between other symptoms. The central stability coefficient showed adequate indices. The strength of hyperarousal symptoms suggested a prominent role of this variable. Our results invite the hypothesis that sleep problems may trigger symptoms specific to depression via fatigue or energy loss. This study is the first to examine the network structure of the associations between the symptoms of depression, anxiety, and insomnia in a sample of informal caregivers, and to explore the role of hyperarousal in this network.

Validation of the Spanish version of the Perceived Control Scale: Perceived Constraints on Personal Control and Perceived Mastery.

OBJECTIVES: Perceived control is a relevant variable for understanding middle and older adults' mental health. The Perceived Control Scale has two dimensions, Perceived Constraints on Personal Control and Perceived Mastery, and is a widely used instrument for assessing perceived control in adults. The aim of this study was to analyze the psychometric properties of the Spanish version of the Perceived Control Scale with data from two different studies. METHOD: In Study 1, 348 older adults between 60 and 92 years old were assessed through face-to-face assessments. In Study 2, 334 adults between 40 and 90 years completed an online survey. Perceived control, self-perceptions of aging, and anxiety and depressive symptomatology were assessed. An exploratory (Study 1) and confirmatory (Study 2) factor analysis of the Perceived Control Scale were performed, and reliability and its relationship with the other assessed variables were evaluated. RESULTS: Results from parallel, exploratory, and confirmatory factor analyses suggested that the Spanish version of the Perceived Control Scale has a bidimensional structure: Perceived Constraints on Personal Control and Perceived Mastery. Good internal consistency was found for the scale in both samples. The results revealed negative and significant associations with negative self-perceptions of aging, and anxiety and depressive symptomatology. CONCLUSION: The Spanish version of the Perceived Control Scale shows good psychometric properties which endorse its use with middle-aged and older adults assessed either face-to-face or through online surveys.

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.

Transcultural Adaptation of the "Caregiver Guilt Questionnaire" (CGQ).

OBJECTIVES: To implement a transcultural adaptation of the Caregiver Guilt Questionnaire (CGQ) for the Brazilian population. METHODS: Five stages were involved in the adaptation: two independent translations by Brazilian nationals fluent in Spanish; summary of translations produced; back-translation; evaluation by expert panel of judges (n = 5); and lastly, assessment by family caregivers (n = 30). RESULTS: semantic changes were made to render the items more relevant to Brazilian culture and replicate the five factors of guilt proposed by the original questionnaire. CONCLUSIONS: A Brazilian version of the questionnaire was produced and transculturally adapted for use in Brazil, allowing future validation and application. CLINICAL IMPLICATIONS: The CGQ allows healthcare professionals to quantify feelings of guilt. Clinicians and clinical researcher can use the scale to obtain more precise interventions.

Network Analysis of Comorbid Depressive and Anxious Symptoms in Family Caregivers of People with Dementia.

OBJECTIVES: The aim of this study is an in-depth approach to depressive-anxious comorbidity in caregivers according to stress reactivity to disruptive behaviors using network analysis. METHODS: The sample was composed of 317 primary family caregivers recruited through Day Care Centers and Neurology Services. The sample was split into low and high stress reactivity groups, based on their reports of reaction to disruptive behaviors. Depressive and anxious symptoms, daily hours dedicated to caregiving, time of caring, frequency of disruptive behaviors, co-residence, and kinship were also cross-sectionally measured. RESULTS: The sample had a mean age of 62.38 years (SD = 12.97) and 68.5% were women. Regarding the network analysis, while the low reactivity group presents a sparse network, with no connection between anxious and depressive symptoms, the high reactivity group shows a high connection of intra and intercategory symptoms, with apathy, sadness, feeling depressed, and tension being the bridge symptoms between disorders. CONCLUSIONS: Caregivers' stress reaction to disruptive behaviors might be a key factor for understanding comorbidity between depressive and anxious symptoms. CLINICAL IMPLICATIONS: Tension, apathy, sadness, and feeling depressed should be clinical targets in the interventions, as they act as bridge symptoms between anxious and depressive symptomatology.

Ambivalent Feelings and Relationship Quality in Dementia Family Caregivers: Associations with Depressive Symptomatology.

OBJECTIVES: Ambivalent feelings in dementia family caregivers have been found to be related to caregivers´ stress associated with the behavioral and psychological symptoms of dementia (BPSD-related stress), and depressive symptoms. Ambivalent feelings may also affect caregivers´ perceived quality of the relationship with the person living with dementia (PLwD), but this variable has been scarcely studied. This study analyzes the role of ambivalent feelings in the association between caregivers' BPSD-related stress, perceived quality of the relationship with the PLwD, and depressive symptomatology. METHODS: A theoretical model was developed and tested in a sample of 390 family caregivers. RESULTS: The obtained tested model had an excellent fit to the data, explaining 24% of the variance of depressive symptomatology. A significant association was found between caregivers' BPSD-related stress, ambivalent feelings, and depressive symptomatology. Also, an indirect effect in the association between ambivalent feelings and depressive symptomatology was found through the perceived quality of the relationship. CONCLUSIONS: Ambivalent feelings in dementia family caregivers are associated with caregivers' BPSD-related stress, perception of a lower relationship quality, and higher depressive symptomatology. CLINICAL IMPLICATIONS: Targeting caregivers' ambivalent feelings and the quality of the relationship in interventions for dementia family caregivers may decrease their distress.

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.

Sociocultural factors, guilt and depression in family caregivers of people with dementia. Kinship differences.

OBJECTIVES: This study aims to analyze the role that family obligations and social desirability have for understanding guilt and depressive symptoms in family caregivers. A theoretical model is proposed to analyze this significance based on the kinship with the person cared for. METHODS: Participants are 284 family caregivers of people with dementia divided into four kinship groups (husbands, wives, daughters and sons). Face-to-face interviews were conducted assessing sociodemographic variables, familism (family obligations), dysfunctional thoughts, social desirability, frequency and discomfort associated with problematic behaviors, guilt and depressive symptoms. Path analyses are performed to analyze the fit of the proposed model and multigroup analysis to study potential differences between kinship groups. RESULTS: The proposed model fits the data well and explains significant percentages of variance of guilt feelings and depressive symptomatology for each group. The multigroup analysis suggests that, for daughters, higher family obligations were associated with depressive symptomatology through a report of higher dysfunctional thoughts. For daughters and wives, an indirect association between social desirability and guilt was observed through reaction to problematic behaviors. CONCLUSION: The results support the need to consider the significance of sociocultural aspects such as family obligations and the desirability bias in the design and implementation of interventions for caregivers, especially for daughters. Considering that the variables that contribute to explaining caregivers' distress vary depending on the relationship with the person cared for, individualized interventions may be warranted depending on the kinship group.

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.

'I feel old and have aging stereotypes'. Internalized aging stereotypes and older adults' mental health: the mediational role of loneliness.

OBJECTIVES: The main objective of this study was to analyze the role of aging stereotype activation (when older adults with aging stereotypes begin to consider themselves as older persons) in the relationship between ageist stereotypes, depressive, anxiety, loneliness, and comorbid anxiety-depressive symptoms. METHODS: Participants were 182 autonomous community-dwelling people between 60 and 88 (mean age = 72.30; SD = 5.53). Three path models were tested exploring the role of considering oneself as an older person as a moderator variable. Ageist stereotypes were included as the independent variable, loneliness as the mediating variable, and anxiety symptoms, depressive symptoms, and comorbid anxiety-depressive symptoms as dependent variables for each model. RESULTS: The results suggest an influence of ageist stereotypes on anxiety, depressive, and comorbid anxiety-depressive symptoms only in older adults who consider themselves as older persons, and mediated by loneliness. CONCLUSION: This study suggests that, when someone considers him or herself as an older person, ageist stereotypes activate loneliness feelings, and this activation is associated with psychological distress, including anxiety, depressive, and comorbid anxiety-depressive symptoms.

Cross-cultural analysis of the role of ambivalent feelings for understanding caregivers' depressive symptoms.

OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are considered to cause ambivalent feelings in caregivers that may contribute to understanding their depressive symptoms. Transnational research is needed in order to increase our knowledge about the cross-cultural equivalence of theoretical models to understand caregivers' mental health. The aim of this study was to cross-culturally analyze the association between BPSD, ambivalent feelings and depressive symptoms in two samples of family caregivers of people with dementia from Spain and the UK. METHODS: Participants in this study were 432 caregivers who completed measures of BPSD, ambivalent feelings and depressive symptoms. The association between the assessed variables was tested through path-analysis, with differences between countries tested through multigroup analysis. RESULTS: The results suggest that the influence of BPSD on caregivers' depressive symptoms is indirect, through ambivalent feelings. The observed associations were equivalent between countries and explained a significant percentage of the variance of depressive symptoms. CONCLUSION: The findings of this study provide, for the first time, evidence of equivalent cross-cultural paths analyzing the role of ambivalent feelings for understanding caregivers' depressive symptoms. The practical implications of these results are discussed.

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.

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.

To pay attention or not: The associations between attentional bias towards negative emotional information and anxiety, guilt feelings, and experiential avoidance in dementia family caregivers.

Caring for a relative with dementia has been linked to negative consequences for caregivers' psychological health, such as anxiety or guilt. Cognitive theories of psychopathology propose that attentional bias towards negative stimuli contribute to the development and maintenance of emotional disorders and clinical symptomatology. However, attentional bias has scarcely been explored in dementia family caregivers. The aim of this study was to examine the relationship between attentional bias and anxiety symptomatology, guilt feelings, and experiential avoidance in a sample of dementia family caregivers. Participants were 226 dementia family caregivers. Attentional bias was measured using a novel priming adaptation of the dot-probe task. The sample was divided into high and low anxiety symptomatology, guilt feelings, and experiential avoidance groups. The results revealed two opposite patterns of emotional information processing in dementia family caregivers. While anxiety was found to be associated with an attentional preference for negative information, experiential avoidance was related to attentional avoidance of this information. Although guilt was also related to an attentional preference for negative information, this relationship was no longer significant when controlling for anxiety levels. These inflexible attentional patterns may have negative clinical consequences, given that in both cases relevant information necessary for adaptive coping with the stressful situation of caregiving may be unattended to or omitted.

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.

"I Feel Guilty". Exploring Guilt-Related Dynamics in Family Caregivers of People with Dementia.

Objectives: Family caregivers of people with dementia often report feelings of guilt. However, the number of studies analyzing guilt and the factors associated with its appearance are scarce. The aim of this study is to explore the subjective experience of guilt in the family care of people with dementia.Methods: A qualitative analysis of the narratives of 13 family caregivers of people with dementia about their feelings of guilt was done.Results: Seven categories for understanding guilt in caregiving were obtained: guilt derived from actions themselves; guilt derived from one's limitations; guilt for feeling negative emotions; guilt associated with the change in the relationship with the person cared for; guilt for neglecting other areas; guilt induced by the person cared for, and guilt induced by others. The results showed the existence of cases in which guilt is absent by distress-avoiding processes.Conclusions: Guilt is a relevant variable in understanding caregiver distress, and its analysis is necessary for therapeutic work in the field of care.Clinical implications: Psychological interventions aimed at family caregivers should include specific techniques in order to address guilt feelings.

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.