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.

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.

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.

"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.

Family Dynamics in Dementia Caregiving: Development and Validation of the Interpersonal Triggers of Guilt in Dementia Caregiving Questionnaire (ITGDCQ).

The objective was to develop the Interpersonal Triggers of Guilt in Dementia Caregiving Questionnaire (ITGDCQ). An emotion frequently experienced by caregivers is guilt. However, the studies analyzing potential factors that generate guilt are scarce. Guilt may be generated through interpersonal interactions. A total of 201 dementia caregivers were evaluated for frequency of leisure, guilt, anxiety, depression, and a pool of items measuring the frequency, and guilt was derived from different behaviors performed by the care recipient (ITGDCQ-CR) and other relatives (ITGDCQ-OR). Exploratory factor analysis of the ITGDCQ-CR showed a two-factor solution, explaining 56.24% of the variance. The ITGDCQ-OR subscale also showed two factors, explaining 63.24% of the variance. All the factors had acceptable to good reliability indexes. Positive associations were found between both subscales and depression, anxiety, guilt, and stress associated with CR's behavioral problems. ITGDCQ-CR was negatively correlated with frequency of leisure. The interpersonal dynamics assessed with the ITGDCQ generated other emotions such as anger or sadness. Through structural equation modeling, 28% of the variance of caregivers' distress was explained by the assessed variables, including a significant contribution of the interpersonal dynamics assessed with the ITGDCQ. The results provide preliminary support for the use of the ITGDCQ as a valid and reliable measure of care recipients' or other relatives' factors that trigger or facilitate the experience of guilt in the caregivers. The association between these factors and caregiver distress suggests potential clinical implications for the findings.

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.

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.

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.

Psychosocial Predictors of Anxiety in Nursing Home Staff.

OBJECTIVES: Although research shows that nursing home staff experience significant levels of stress and burnout, studies analyzing the relationship of psychosocial variables on their feelings of anxiety are scarce. This study aims to analyze the relationship between psychosocial variables and levels of anxiety among staff. METHOD: Participants were 101 nursing home professionals. In addition to anxiety, socio-demographic variables, depersonalization, burden, relationship with families of the residents, and guilt about the care offered to the residents were assessed. A hierarchical regression analysis was carried out to analyze the contribution of the assessed variables to staff anxiety levels. RESULTS: The obtained model explained 57% of the variance in anxious symptomatology. Guilt about the care offered and poor quality of the relationship with residents' family were associated with anxiety. Further, working at nursing homes where the staff report higher levels of anxiety symptoms, the presence of depersonalization and burden were also associated with anxiety. CONCLUSION: The findings suggest that in addition to work-related variables (burden and burnout), problems with family members and guilt about the care offered are relevant variables for understanding staff's anxious symptomatology. CLINICAL IMPLICATIONS: Interventions that address issues of guilt about the quality of care, and problematic relationships with family members of residents, may have potential to reduce staff anxiety and promote their well-being.

Commitment to personal values and guilt feelings in dementia caregivers.

BACKGROUND: Caregivers' commitment to personal values is linked to caregivers' well-being, although the effects of personal values on caregivers' guilt have not been explored to date. The goal of this study is to analyze the relationship between caregivers´ commitment to personal values and guilt feelings. METHOD: Participants were 179 dementia family caregivers. Face-to-face interviews were carried out to describe sociodemographic variables and assess stressors, caregivers' commitment to personal values and guilt feelings. Commitment to values was conceptualized as two factors (commitment to own values and commitment to family values) and 12 specific individual values (e.g. education, family or caregiving role). Hierarchical regressions were performed controlling for sociodemographic variables and stressors, and introducing the two commitment factors (in a first regression) or the commitment to individual/specific values (in a second regression) as predictors of guilt. RESULTS: In terms of the commitment to values factors, the analyzed regression model explained 21% of the variance of guilt feelings. Only the factor commitment to family values contributed significantly to the model, explaining 7% of variance. With regard to the regression analyzing the contribution of specific values to caregivers' guilt, commitment to the caregiving role and with leisure contributed negatively and significantly to the explanation of caregivers' guilt. Commitment to work contributed positively to guilt feelings. The full model explained 30% of guilt feelings variance. The specific values explained 16% of the variance. CONCLUSION: Our findings suggest that commitment to personal values is a relevant variable to understand guilt feelings in caregivers.

Profiles of Dementia Caregivers according to Psychosocial and Resource Variables. Importance of Kinship.

The present study aims to analyze the existence of different profiles in family caregivers of people with dementia according to psychosocial and resource variables. In addition, it aims to study whether there is a greater representation of each kinship group in each of the profiles and if there are differences in emotional distress among such profiles considering the kinship with the care-recipient. Participants were 288 family dementia caregivers, divided into four kinship groups (wives, husbands, sons and daughters). Psychosocial (familism, dysfunctional thoughts and experiential avoidance), resource (leisure activities and social support) and outcomes (depressive, anxious and guilt symptomatology) variables were collected. A hierarchical cluster analysis using Ward's method, an exploratory factor analysis of two fixed factors and contingency tables were performed. Five clusters were obtained: Low psychosocial vulnerability-High resources, Low psychosocial vulnerability-Low resources, Mixed, High psychosocial vulnerability-High resources, and High psychosocial vulnerability-Low resources. Results suggested that clusters associated with lower distress were the Low psychosocial vulnerability-High resources and the High psychosocial vulnerability-High resources. Clusters associated with higher distress were the Low psychosocial vulnerability-Low resources and Mixed. High levels of dysfunctional thoughts, familism and experiential avoidance do not always have a maladaptive function. This could depend on sociocultural and resource variables such as the kinship with the caregiver or perceived social support. The identification of profiles of family caregivers potentially needing protection and vulnerable to psychological distress could help to increase the effectiveness of interventions aimed at this population.

Longitudinal effects of ambivalent and guilt feelings on dementia family caregivers' depressive symptoms.

BACKGROUND: The world prevalence of people with dementia is increasing. Most of the care received by people with dementia is provided by family caregivers, and this prolonged activity has a significant impact on caregivers' levels of depression. Stressors and frequency of leisure are known predictors of caregivers' depressive levels. The longitudinal impact of caregivers' ambivalent and guilt feelings is unknown. METHODS: Participants were 177 family caregivers of relatives with dementia who were assessed three times during a 2-year period. In addition to demographic variables, psychological symptoms of the dementias, and frequency of leisure activities, caregivers' ambivalent feelings, guilt, and depressive symptoms were measured. The longitudinal association of changes in these variables with changes in caregivers' depressive symptoms over time was assessed using mixed linear models. RESULTS: Changes over time in the assessed variables predicted 48.05% of variance of changes over time in depressive symptoms. Even when variables strongly associated with increased depressive symptoms were controlled (lower caregivers' age and educational level, higher reaction to BPSD, and lower leisure activities), increases in ambivalence and guilt contributed to an increase of 9.22% of the variance of changes depressive symptoms over a 2-year period. The effects of ambivalent feelings on depression are indirect, mediated by guilt feelings. Cessation of caregiving do not seem to alter these findings. CONCLUSIONS: Caregivers' ambivalent and guilt feelings are significant predictors of caregivers' mental health. Caregivers may significantly benefit from early detection of ambivalent and guilt feelings and preventive strategies targeting triggers associated with ambivalent and guilt symptoms.

[Anticipatory grief in family caregivers of persons with dementia. Psychosocial correlates and impact on caregiver's health: A literature review]. / Duelo anticipado en familiares de personas con demencia. Variables psicosociales asociadas y su impacto sobre la salud del cuidador. Una revisión de literatura.

INTRODUCTION: Taking care of a relative with dementia may be linked to negative consequences for the caregiver. One of the processes that can be experienced is anticipatory grief, that is defined as the feelings of pain and loss that appear in the caregiver before the death of the person cared for. OBJECTIVES: The review aimed to conceptualize anticipatory grief in this population, to study the related psychosocial variables, and to know the repercussions for the health of the caregiver. METHOD: A systematic search was made under the directives of PRISMA statement in the ProQuest, PubMed, Web of Science (WOS), and Scopus databases, including studies published in the last 10 years (2013-2023). RESULTS: A total of 160 articles were obtained, 15 being finally selected. It is observed that anticipatory grief is defined as an ambiguous process since it appeared before the death of the sick family member. Being a female caregiver, spouse of a family member with dementia, having a closer relationship with him and/or having an important responsibility in care, are associated with a greater chance of experiencing anticipatory grief. In relation to the person cared for, if he or she is in a severe phase of the disease, is younger, and/or presents problematic behaviours, there is also greater anticipatory grief in the family caregiver. Anticipatory grief has a significant impact on caregivers' physical, psychological, and social health, being associated with greater burden, depressive symptomatology, and social isolation. CONCLUSIONS: Anticipatory grief turns out to be a relevant concept in the context of dementia, being necessary to include it in intervention programs for this population.

Satisfied as professionals, but also exhausted and worried!!: The role of job demands, resources and emotional experiences of Spanish nursing home workers during the COVID-19 pandemic.

Nursing home workers have been exposed to great physical and mental burdens during the COVID-19 pandemic. Although this has generated high levels of exhaustion, it may also have contributed to feelings of professional satisfaction. The objective of this study was to explore the levels of satisfaction among nursing home workers during the COVID-19 pandemic, as well as the role of job demands, resources and emotional experiences in explaining their levels of satisfaction. This cross-sectional study was conducted in Spain between March and May 2020. Three hundred and thirty-five nursing home workers participated. A quantitative analysis was conducted, as was a content analysis of the responses to an open-ended question about the respondents' perceptions of job demands and resources during the crisis. The results showed that workers had very high levels of satisfaction. Social pressure from work, contact with death and suffering, and emotional exhaustion were negatively associated with satisfaction. Moreover, under conditions of extensive contact with suffering people and great fear of contagion, social support at work was shown to promote professional satisfaction. In conclusion, nursing home workers in Spain experienced high rates of satisfaction during the COVID-19 crisis despite the high job demands, lack of job resources, fear of contagion and exhaustion. The main practical implication of this study is the importance of ensuring optimal working conditions in the nursing home sector in order to guarantee professional satisfaction, prevent burnout, reduce turnover and promote post-crisis resilience.

The relationship between guilt feelings, conflicts with staff and satisfaction with care in relatives of nursing home residents with dementia: A longitudinal analysis.

INTRODUCTION: Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers' guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. METHOD: Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers' guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. RESULTS: Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt (ß = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (ß = -0.10; p< 0.05; 95% CI: -0.18 to -0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (ß = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (ß = -0.07; p = 0.10; 95% CI: -0.16 to 0.01). DISCUSSION: More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes.

Compassion in dementia caregiving: Psychometric properties of the Caregiving Compassion Scale in Spanish caregivers.

Compassion has been suggested as a relevant variable for understanding dementia caregivers' psychological distress. The objectives were to analyse the psychometric properties of the Caregiving Compassion Scale (CCS) and to explore the association between caregivers' compassion and their emotional health. Two hundred and thirty-six dementia caregivers were evaluated for compassion, depressive symptoms, guilt, ambivalence, care-recipient's functional and cognitive status, frequency of behavioural problems and desire to institutionalise the care-recipient. Exploratory factor analyses, correlations and regression analyses were done. Two factors were obtained. The factor labelled "Distress from witnessing the care recipient suffering" was associated with higher stress linked to witness depressive problems in the care-recipient and with caregivers' ambivalence and guilt levels. The factor labelled "Motivation/disposition for helping" was associated with less desire for institutionalisation, and it showed a negative association with ambivalence and guilt feelings. The CCS seems to be a valid and reliable scale for assessing compassion in dementia caregivers.