Effect of perceived stigmatisation on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness

Background   Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers' QoL between family carers of adults with ID and family carers of adults with MI and aim to examine the effect of these differences in stigma on carer QoL between the two groups.
Methods   A structural survey interview was administered to 350 female family carers supporting persons with ID and 66 female carers supporting persons with MI; the carers were aged 55 years and older, and the interviews were carried between July 2006 and April 2007 at the carers' homes in a county in Taiwan. The survey package contained standardised scales to measure the carer's stigma, social support, QoL and health as well as adult and carer socio-demographic data.
Results   The results highlight that in both groups the ageing female family carers' health and social support were strongly associated with the level of their QoL even though there was also a strong effect of carers' perceived stigma on their QoL. Contrary to previous findings, ageing female family carers of adults with MI had a higher level of QoL compared with the carers of adults with ID. Hierarchical regressions show a stronger effect of perceived stigma on the carer QoL among the family carers of adults with MI than among the carers of adults with ID.
Conclusions   This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position.     

Correlates of cognitive impairment and depressive symptoms among older adults in Korea and Japan

BACKGROUND: Cognitive impairment and depressive symptoms impose a heavy burden on the care of the elderly in Japan and Korea, two of the fastest aging nations in Asia. The purpose of this study was to examine and compare factors associated with cognitive impairment and depressive symptoms among older persons in the two countries. METHODS: In 2002, representative samples of community-dwelling people aged 65 and older were selected among residents in Anyang, Korea and Yoita, Japan. Mini-Mental State Examination and Geriatric Depression Scale were used to assess the elderly's mental status. Sociodemographics, physical function, chronic conditions, social support, and health behaviors were examined to identify significant associations. RESULTS: The prevalence of cognitive impairment in older adults was 17.0% in Anyang and 14.6% in Yoita. The rates for depressive symptoms were 15.2% and 19.8%, respectively. Overall, functional capacity was the universal factor significantly associated with mental conditions. Self-rated health and social support were also found to be independently associated with depressive symptoms in the study subjects. Differences in the patterns of association by community, however, were notable for other characteristics. For example, in factors associated with cognitive impairment, sociodemographic factors such as age, gender, and education were significant among Koreans, whereas socio-behavioral factors such as obesity, social support and hospitalization experience were found to be significant for older Japanese residents. CONCLUSIONS: Similarities in the patterns of association indicate the need for joint explorations into the role these factors play in affecting the mental health of older persons. Socioeconomic and regional differentials, however, may account for the disparity in the associations observed, suggesting the importance of developing mental health programs sensitive to the older individual's culture.     

Psychosocial and Cognitive Health Differences by Caregiver Status Among Older Mexican Americans

This study identifies the risk and protective factors associated with informal caregiving by older (≥70 years) Mexican Americans and profiles caregiving arrangements. Overall, a greater number of informal caregivers (n = 92) were married and female. They also had higher physical functioning and better cognition than non-caregivers (n = 1,888) but fewer visited a physician regularly. Informal caregivers also showed an increased risk of depressive symptoms. A third of caregivers spent more than 20 h/day caregiving and the majority (84%) of care recipients were family members. In order to support the efforts of this disproportionately burdened caregiver group, increased social support and healthcare services are needed.     

Sleep and well-being in young men with neuromuscular disorders receiving non-invasive ventilation and their carers

Nocturnal ventilation has improved the physical status and life span of childhood neuromuscular disorders: the purpose of this study was to assess the implications for sleep and well-being in patients and carers. Ten young men (age range 12–25 years) with neuromuscular disorders on assisted ventilation and/or their main carers completed questionnaires on sleep quality, physical and psychological well-being, family burden and function. Both patients and parents expressed satisfaction with ventilation treatment. Compared to standardised values patients reported reduced sleep quality, but their mental health was not substantially affected. Poor sleep quality in carers – but not in patients – was significantly associated with risk for emotional (anxiety and depressive) disorders, reduced physical/emotional health, family burden and difficulty. We conclude that patients were generally well adapted psychologically, but sleep quality was poor and in carers this was linked to reduced well-being and family burden.     

The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy

OBJECTIVE: (a) To explore burden related to caregiving and support received from professionals and social network in relatives of patients with schizophrenia in Northern, Central and Southern Italy; and (b) to test whether a higher level of family burden is associated with a lower level of professional and social network support. METHOD: Seven hundred and nine patients with schizophrenia and their key-relatives were consecutively recruited in 30 Italian mental health departments. Data were collected on: (a) patients' clinical status and levels of disability; (b) relatives' burden, social and professional support; (c) interventions received by patients and their families. RESULTS: Family burden was found lower in Northern Italy. However, after controlling for psychosocial interventions, differences in family burden among the three geographical areas disappeared. Family burden was associated with patients' levels of disability and manic/hostility symptoms, and with professional and social network support received by the family. CONCLUSION: Professional and social network support represent crucial resources to reduce family burden in schizophrenia.     

Psychosocial effects on carers of living with persons with dementia

A survey of members of the Alzheimer's Disease and Related Disorders Society confirmed high rates of psychological morbidity, though not of depression, and social isolation in family carers of persons with dementia. Psychological morbidity in carers was associated with having an affected person at home, the carer being a spouse, demanding problem behaviours, poor physical health in the carer, social isolation, dissatisfaction with social supports, greater use of psychotropic medication, and a deteriorated marital relationship. Carers and patients had high rates of consultations with doctors and other health professionals. There was a vulnerable group of carers who were impaired psychologically, socially and physically. The identification of risk factors to carer morbidity may lead to useful interventions.     

Prevalence and correlates of burden among caregivers of patients with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder

OBJECTIVES: Caring for a relative with schizophrenia or dementia is associated with reports of high caregiver burden, symptoms of depression, poor physical health, negligence of the caregiver's own health needs, elevated health service use, low use of social supports, and financial strain. This study presents the design and preliminary data on the costs and consequences of caring for a relative or friend with bipolar disorder from the Family Experience Study, a longitudinal study of the primary caregivers to 500 patients enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder. METHODS: Subjects were primary caregivers of 500 patients with bipolar disorder diagnosed by the Mini International Neuropsychiatric Interview and the Affective Disorder Evaluation. Caregivers were evaluated within 1 month after patients entered Systematic Treatment Enhancement Program using measures of burden, coping, health/mental health, and use of resources and costs. RESULTS: Eighty-nine percent, 52%, and 61% of caregivers, respectively, experienced moderate or higher burden in relation to patient problem behaviors, role dysfunction, or disruption of household routine. High burden caregivers reported more physical health problems, depressive symptoms, health risk behavior and health service use, and less social support than less burden caregivers. They also provided more financial support to their bipolar relative. CONCLUSIONS: Burdens experienced by family caregivers of people with bipolar disorder are associated with problems in health, mental health, and cost. Psychosocial interventions targeting the strains of caregiving for a patient with bipolar disorder are needed.     

Emotional over-involvement can be deleterious for caregivers’ health

The study of emotional over-involvement (EOI) has focused primarily on its relationship with patients’ course of illness. We know little about the predictors and possible consequences of EOI for caregivers. Based on past research, we tested the hypotheses that EOI is associated with worse physical and psychological health among caregivers and examined whether caregiver burden and social support may mediate this relationship. Method In a sample of 37 Mexican American caregivers and their ill relatives recruited from two outpatient clinics, we examined the relationships between EOI, caregiver burden, caregivers’ level of social support, and caregivers’ health. Additionally, we examined whether caregiver burden and social support may mediate the relationship between EOI and caregivers’ health. Cross-sectional analysis indicates that at baseline EOI was not associated with caregiver burden or social support, but was related to worse current health. Longitudinal analysis, however, indicates that EOI at baseline was associated with greater burden, less instrumental support, and worse health among caregivers at follow-up. Moreover, objective burden and instrumental support mediated the relationship between EOI and several health outcomes. Consequently, EOI may be a marker of poor current health status and predicts worse future health among Mexican–American caregiving relatives of individuals with schizophrenia. Moreover, changes in burden and social support associated with EOI appear to mediate the relationship between EOI and several health outcomes among caregivers. These findings suggest that it might be important for family interventions to not only address the functioning of individuals with schizophrenia but also their caregiving relatives.     

Coping strategies and social support as predictors and mediators of eating disorder carer burden and psychological distress

Purpose  

Caring for someone with an eating disorder is associated with a high level of burden and psychological distress. While models for the prediction of carer burden have previously been investigated, these have typically neglected the role of coping strategies and social support. Thus, the current study will examine predictors of both carer burden and carer psychological distress in eating disorder carers. Further, the mediating roles of coping strategies and social support will be investigated.     

Depressive symptoms in middle-aged women are more strongly associated with physical health and social support than with socioeconomic factors

The association of socioeconomic factors, health-related factors, and social support with depressive symptoms has been extensively studied. However, most epidemiological studies have focused on a few factors such as marital status, social class, and employment. In this study of middle-aged women we analyzed both univariate and multivariate associations of socioeconomic factors, perceived physical health factors, and social support with self-rated depressive symptoms measured with the Beck Depression Inventory. A nationwide sample (n =1851) of Finnish women aged 48 -50 years was analyzed. Socioeconomic, health-related, and social support factors were all measured with single items. All variables, except level of urbanization, were significantly associated with depressive symptoms in univariate analyses. Multivariate associations were examined with standard multiple regression analyses in three stages: first with the socioeconomic factors, then with socioeconomic and health factors, and finally entering the social support factors into the regression model. In the first model, being either on a sick leave or at home as working status, being divorced, and having low income reached significance. In the second model, being divorced and having poor perceived physical health were the most powerful among the five significant variables. In the last model, explaining 32% of the variance, the most powerful predictors of depressive symptoms were perceived current physical health, satisfaction with received social support, and quality of intimate relationships. For the prevention or intervention of depressive symptoms among middle-aged women in the population subjects with concurrent subjective or objective health problems and poor social support seem to comprise a particularly important target group.     

Psychosocial consequences of caring for a spouse with multiple sclerosis

Abstract

Fifty-five spousal caregivers of persons with multiple sclerosis completed a questionnaire assessing the stress associated with caregiving. They were found to experience a range of negative effects, similar to those reported by other groups of carers of persons with degenerative neurological diseases. The behaviors causing most distress to the carers were associated with motor problems, sudden mood changes, partner upsetting other people, incontinence, and pain. Overall, wives had higher burden scores than husbands. This was accounted for primarily by their higher levels of physical distress, such as tiredness. Following the stress-appraisal-coping model of Lazarus and Folkman (1984) it was hypothesized that individual differences in burden would be accounted for primarily by the carers' appraisal of the symptoms, perceived social support, and satisfaction with coping. Regression analyses supported the importance of satisfaction with coping and social support as predictors of perceived burden. In addition, life satisfaction was found to be predicted by burden independently of other predictors.     

Initiating activities of daily living contributes to well‐being in people with dementia and their carers

Objective

Problems with everyday functioning are linked to reduced well‐being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD.

Methods

Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R‐IDDD2), and measures on carer burden, well‐being, and person with dementia well‐being. Data were analysed using correlation analysis.

Results

Two hundred and seventy‐two carers completed the R‐IDDD2. Carers were grouped into those with low or high ratings of well‐being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well‐being. Initiating computer use, driving, and medication management were not related to carer burden.

Conclusions

Findings from this study can have direct implications for improving care management early in the disease. Post‐diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies. Copyright © 2017 John Wiley & Sons, Ltd.     

Depressive symptoms in middle-aged women are more strongly associated with physical health and social support than with socioeconomic factors

The association of socioeconomic factors, health-related factors, and social support with depressive symptoms has been extensively studied. However, most epidemiological studies have focused on a few factors such as marital status, social class, and employment. In this study of middle-aged women we analyzed both univariate and multivariate associations of socioeconomic factors, perceived physical health factors, and social support with self-rated depressive symptoms measured with the Beck Depression Inventory. A nationwide sample (n = 1851) of Finnish women aged 48-50 years was analyzed. Socioeconomic, health-related, and social support factors were all measured with single items. All variables, except level of urbanization, were significantly associated with depressive symptoms in univariate analyses. Multivariate associations were examined with standard multiple regression analyses in three stages: first with the socioeconomic factors, then with socioeconomic and health factors, and finally entering the social support factors into the regression model. In the first model, being either on a sick leave or at home as working status, being divorced, and having low income reached significance. In the second model, being divorced and having poor perceived physical health were the most powerful among the five significant variables. In the last model, explaining 32% of the variance, the most powerful predictors of depressive symptoms were perceived current physical health, satisfaction with received social support, and quality of intimate relationships. For the prevention or intervention of depressive symptoms among middle-aged women in the population subjects with concurrent subjective or objective health problems and poor social support seem to comprise a particularly important target group.     

Rumination,gender, and depressive symptoms associated with caregiving strain in bipolar disorder

Perlick DA, Gonzalez J, Michael L, Huth M, Culver J, Kaczynski R. Calabrese J. Miklowitz DJ. Rumination, gender, and depressive symptoms associated with caregiving strain in bipolar disorder. Objective: To evaluate the associations between indices of caregiving strain, ruminative style, depressive symptoms, and gender among family members of patients with bipolar disorder. Method: One hundred and fifty primary caregivers of patients enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP‐BD) participated in a cross‐sectional study to evaluate the role of ruminative style in maintaining depressive symptoms associated with caregiving strain. Patient lifetime diagnosis and current episode status were evaluated by the Affective Disorder Evaluation and the Clinical Monitoring Form. Caregivers were evaluated within 30 days of the patient on measures of family strain, depressive symptoms, and ruminative style. Results: Men and women did not differ on depression, caregiver strain, or ruminative style scores. Scores suggest an overall mild level of depression and moderate caregiver strain for the sample. Greater caregiver strain was significantly associated (P < 0.05) with rumination and level of depressive symptoms, controlling for patient clinical status and demographic variables. Rumination reduced the apparent association between strain and depression by nearly half. Gender was not significantly associated with depression or rumination. Conclusion: Rumination helps explain depressive symptoms experienced by both male and female caregivers of patients with bipolar disorder. Interventions for caregivers targeted at decreasing rumination should be considered.     

EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--Factors associated with carer burden.

BACKGROUND: The challenges presented by the increasing public health and social impact of caring for people with dementia have become clear in recent years. Previous research has identified that, while there are positive as well as negative elements to the caring role, carers are at high risk of mental health problems and that the comprehensive burden of caring has social, economic and health based elements. Co-resident carers, especially spouses, are of primary importance in maintaining people with dementia in their own homes in the community rather than in institutional settings which may be both more costly and have greater environmental poverty. There have, however, been few studies which have sought to investigate factors associated with carer burden and differences and similarities between countries. In this study we aimed to produce a cross-national profile of co-resident spouse carers across the European Community, with particular attention to: living arrangements; formal and informal support; service satisfaction; perceived burden; and psychological well-being. METHOD: Twenty co-resident spouse carers of people with NINCDS-ADRDA probable dementia, who had been diagnosed as such within the past 12-36 months, were recruited from service contacts in each of 14 out of the 15 countries of the EU. All completed a semi-structured interview which included: sociodemographic data; data on health and social service use; the Carer Burden Inventory (CBI); the General Health Questionnaire-12 (GHQ-12); and open-ended qualitative questions about the experience of caring. RESULTS: Two hundred and eighty couples were recruited. There was marked variation in all variables of interest between countries, but there were consistently high ratings of carer burden (mean CBI scores between 28 and 52) and psychological distress (between 40% and 75% scoring 4 or more on the GHQ-12). Using multivariate analyses (generalized linear modelling) to estimate the individual associations of variables of interest with carer burden, controlling for the effects of all other variables in the model, the following results were obtained: 11.4% (p = 0.003) of the variance was accounted for by between-country variation; 4.9% (p < 0.001) by expressed financial dissatisfaction; 4.5% (p = 0.001) by lower carer age; 3.2% (p = 0.004) by difficulties with spouse behavioural deficits; and 2.0% (p = 0.024) by perceived negative social reactions. There was a low level of contact with support groups and Alzheimer's disease societies despite the samples having been of service contacts. CONCLUSIONS: This study confirms the high level of burden and mental distress in spouse carers for people with Alzheimer's disease in the European Community. It suggests that there are elements of burden which may vary by country but also elements which have a common effect in all. These data suggest avenues for the primary and secondary prevention of burden by addressing clinical issues (e.g. behavioural disturbance); public attitudes and education (e.g. negative social reactions); economic support for carers (e.g. financial dissatisfaction); and higher risk groups (e.g. younger spouse carers).     

Predictors of burden and depression among nursing home family caregivers

This study identified predictors of caregiver burden and depression among family caregivers to nursing home residents. Pearlin's stress process model was used as a theoretical framework. Structured interviews were conducted with 103 family caregivers to nursing home residents. Multiple regression analysis was used to determine the relationship of contextual variables (caregiver age, income, health), caregiving stressors (resident's memory and behaviour problems, caregiving tasks, satisfaction with nursing home), and social support with caregiver burden and depression. All three domains of predictor variables were significantly related to caregiver burden. Only contextual factors and social support predicted depression. Depression levels were elevated in this sample, with the mean falling above the cutoff for clinical depression. Family members of nursing home residents are at risk for caregiver burden and depression and each outcome has unique predictors in this population. Understanding factors associated with greater burden and depression can guide nursing home staff and mental health professionals in working with family members. Older family members, those in poor physical health or with low incomes are at highest risk, particularly for depression; while families of more impaired residents are at higher risk for burden. Social support is an important factor in alleviating burden and promoting positive mental health.     

Caregiver physical and mental health predicts reactions to caregiving

Self-reported health and reactions to providing care to older adults with cognitive or physical impairments were examined. Health status was examined on a single occasion in 177 persons (aged 63-94 years) referred to programs within a comprehensive set of geriatric care services and the 133 family members involved in their care (ages 31-96 years). The five-scale Caregiver Reaction Assessment (CRA) was administered to the family members. Reliability analyses revealed that the CRA had good internal consistency. Being older was related to experiencing greater health problems in the caregiver role. Greater health problems from providing care were reported by caregivers in worse physical health and also when the care recipient had more physical pain. Caregivers who reported fewer health problems attributed to caregiving reported better mental health and less depressive symptomatology. Caregivers with health problems may be at increased risk of suffering from stress from caregiving.     

Predictors of Depressive Symptomatology Among Lower Social Class Caregivers of Persons with Chronic Mental Illness

This study examined the predictors of depressive symptomatology among caregivers of persons with chronic mental illness. Data were collected through in-person interviews with family caregivers of 103 adults with chronic mental illness who were served by mental health case management agencies. The results indicated that insufficiency of overall social support was the most powerful predictor of caregiver depressive symptomatology. In addition, caregiver burden had a significant unique contribution to caregiver depressive symptomatology, with higher levels of burden associated with greater levels of caregiver depressive symptomatology. Higher levels of client behavioral problems and insufficient support from family members and mental health professionals related to the caregiving role were associated with higher levels of caregiver depressive symptomatology through their associations with care-giver burden. Caregiver race was not significantly related to caregiver burden or to caregiver depressive symptomatology after controlling for other variables. Over two-fifths of White caregivers and over one-quarter of Black caregivers were at risk for clinical depression. Implications for practice and research are discussed.     

Understanding the experience of “burnout” in first-episode psychosis carers

BackgroundThe first onset of psychosis can exert a significant negative impact on the functioning and positive wellbeing of family carers. Carer reports of “burnout” have recently been recorded in early psychosis carers, though the literature is scarce detailing our understanding of how burnout relates to the primary experience of caregiving. The current study investigated reports of burnout and its relationship with beliefs about caregiving and wellbeing in a large group of early psychosis carers who were routinely assessed within an early intervention team.Methods and materialsUsing a cross-sectional design, 169 early psychosis carers completed the Maslach Burnout Inventory alongside measures of caregiving experiences, affect and wellbeing.ResultsThe mean illness length for patients with psychosis was 18 months. Their mean age was 24.4 years and most was male (65%). The majority of carer participants were parental caregivers and living with their relative with psychosis. Across the three key burnout dimensions, 58% of the sample reported high levels of emotional exhaustion; 31% endorsed high levels of depersonalization; and 43% reported low levels personal accomplishment. The most severe level of burnout, reflecting elevated rates across all three dimensions, was observed in 16% of the sample. Carer burnout was positively associated with negative caregiving experiences (i.e. burden), poor affect, and reduced levels of positive wellbeing and perception of being in good health.ConclusionsReports by early psychosis carers of exhaustion, feeling inadequate and expressing negativity towards the relative they care for is not uncommon and are closely associated with their overall negative appraisals of caregiving. The results underscore the importance of developing targeted interventions during the early phase, which are designed to reduce the development and entrenchment of burnout responses in carers, but to also mitigate its negative sequelae.     

A review of instruments developed to measure outcomes for carers of people with mental health problems

Objective: Community‐based care for mental disorders places considerable burden on families and carers. Measuring their experiences has become a priority, but there is no consensus on appropriate instruments. We aimed to review instruments carers consider relevant to their needs and assess evidence for their use. Method: A literature search was conducted for outcome measures used with mental health carers. Identified instruments were assessed for their relevance to the outcomes identified by carers and their psychometric properties. Results: Three hundred and ninety two published articles referring to 241 outcome measures were identified, 64 of which were eligible for review (used in three or more studies). Twenty‐six instruments had good psychometric properties; they measured (i) carers’ well‐being, (ii) the experience of caregiving and (iii) carers’ needs for professional support. Conclusion: Measures exist which have been used to assess the most salient aspects of carer outcome in mental health. All require further work to establish their psychometric properties fully.