Caregiver quality of life in multiple sclerosis: a multicentre Italian study

The purpose of this study was to evaluate the quality of life (QoL) of multiple sclerosis (MS) caregivers, and to determine relationships that may exist between caregiver and patient QoL. Patients with definite MS (n=445) and their caregivers (n=445) were required to complete the generic, 36-item short-form (SF-36) Health Survey. Median SF-36 dimension scores ranged from 55 to 100 for caregivers and from 46 to 78 for patients. Although the QoL of MS carers was not as severely affected as that of patients, caregiving was associated with lower mental health, vitality and general health scores, compared to healthy subjects. Multivariate analyses revealed significant differences between the predictors of patient QoL and caregiver QoL. The main predictors of patient QoL were Expanded Disability Status Scale (EDSS) score, MS course, fatigue and depression. Female gender and advanced age were the main predictors of lower QoL in caregivers. In addition, patient BDI score was found to be a significant predictor of almost all caregiver SF-36 dimension scores, while EDSS score, disease duration and course, and patient therapeutic characteristics were found to be predictors of some caregiver SF-36 dimension scores. Therefore, caregiver QoL was significantly influenced by patient characteristics, and supportive strategies for MS caregivers are warranted.     

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics,caregiving burden,family functioning,and social and professional support

Objective: Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL.

Methods: 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed.

Results: Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD?=?3.7), 13.3 (SD?=?4.2), 11.0 (SD?=?4.7) and 13.5 (SD?=?3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis.

Conclusions: There is a significant association between the caregiver’s burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.     

Coping and its correlates among caregivers of patients with bipolar disorder: a preliminary study

Objectives:  In contrast to schizophrenia, coping patterns of caregivers of bipolar patients have not received much attention. Previous evidence suggests that demographic factors, illness variables, caregiver burden, appraisal, etc can significantly influence coping styles. This study thus attempted to examine coping and its correlates in caregivers of bipolar patients, in comparison with schizophrenia.
Method:  Structured assessments of dysfunction, burden, appraisal, social support available, and coping styles were carried out in caregivers of 38 bipolar patients and 20 patients with schizophrenia (ICD – 10 diagnoses).
Results:  Caregivers used a wide variety of coping strategies, both problem and emotion-focused. In bipolar disorder, demographic parameters, illness duration, levels of dysfunction, burden and social support, and appraisal by caregivers demonstrated significant associations with coping styles of caregivers. Problem-focused coping strategies were more common in caregivers of bipolar patients and emotion-focused strategies in caregivers of schizophrenic patients. These differences appeared to be linked to differences in caregiver-burden and appraisal between the two groups.
Conclusions:  Appraisal by, and burden on caregivers play a major role in determining their style of coping. These factors largely accounted for the differences in coping observed between caregivers of patients of bipolar disorder and schizophrenia, in this study. Reducing burden on caregivers and enhancing their awareness of illness could lead to adoption of more adaptive coping styles by them.     

Caregiver-burden in parkinson's disease is closely associated with psychiatric symptoms, falls, and disability

The majority of care of patients with Parkinson's disease (PD) is provided by informal caregivers; their caregiving not only offers physical and emotional support for patients but also plays a large economic role and prevents early nursing home placement. In order to support caregivers in this role, it is necessary to understand the extent of caregiver-burden and factors associated with increased caregiver-burden and distress. We therefore conducted a postal survey in 123 caregivers of patients with PD to assess caregiver-burden and factors associated with it. The majority of caregivers were female (66%). Over 40% of caregivers indicated that their health had suffered as a result of caregiving, almost half had increased depression scores, and two-thirds reported that their social life had suffered. After adjustment of disease duration, there was no difference in caregiver-burden between younger and older caregivers, or between male and female caregivers. Caregiver-burden increased with increasing disability and symptoms of PD, particularly with mental health problems such as depression, hallucinations, or confusion, and with falls. Caregiver-burden scores also correlated significantly with the patients' depression and quality of life scores, and with caregivers' own satisfaction with their marital and sexual relationship. We conclude that more attention should be paid to caregivers' emotional and physical health, particularly in advancing PD with psychiatric complications and falls. These findings also demonstrate that caregiver and patient quality of life are closely linked and emphasize the importance of including caregiver-burden among the problems associated with PD in order to improve patient and caregiver lives.     

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.     

Psychological well-being over time among informal caregivers caring for persons with dementia living at home

Objectives: To investigate informal caregivers’ psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.

Method: A cohort study at baseline and 3 months’ follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.

Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers’ psychological well-being.

Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers’ psychological well-being, and provide proper care and treatment for caregivers and PwDs.     

A stress and coping model of adjustment to caring for an adult with mental illness

This study investigated the utility of a stress and coping framework for identifying factors associated with adjustment to informal caregiving to adults with mental illness. Relations between stress and coping predictors and negative (distress) and positive (positive affect, life satisfaction, benefit finding, health) carer adjustment outcomes were examined. A total of 114 caregivers completed questionnaires. Predictors included relevant background variables (carer and care recipient characteristics and caregiving context), coping resources (optimism, social support, carer-care recipient relationship quality), appraisal (threat, control, challenge) and coping strategies (problem-focused, avoidance, acceptance, meaning-focused). Results indicated that after controlling for relevant background variables (burden, caregiving frequency, care recipient symptom unpredictability), better caregiver adjustment was related to higher social support and optimism, better quality of carer-care recipient relationship, lower threat and higher challenge appraisals, and less reliance on avoidance coping, as hypothesised. Coping resources emerged as the most consistent predictor of adjustment. Findings support the utility of stress and coping theory in identifying risk and protective factors associated with adaptation to caring for an adult with mental illness.     

Psychosocial predictors of dementia caregiver desire to institutionalize: caregiver, care recipient, and family relationship factors

Several factors influence dementia caregiver desire to institutionalize; however, little is known about differences in caregivers who desire institutionalization versus those who do not. The current study compares predictors of desire to institutionalize in dementia caregivers. Seventy-two caregivers completed the Desire to Institutionalize Scale (DIS) and several psychosocial measures, including burden, dementia knowledge, self-efficacy, depression, health, care recipient daily functioning and memory/behavior problems, family functioning, and social support. Based on DIS responses, caregivers were divided into No DI versus DI groups. DI caregivers had significantly higher burden, greater dementia knowledge, more family dysfunction, and decreased social support compared with No DI caregivers. Findings emphasize the importance of caregiver and family relationship variables in DIS, suggesting potentially modifiable targets for caregiver interventions. Dementia knowledge was associated with higher DIS, suggesting that educational programs alone may not be helpful to delay institutionalization.     

Factors associated with stigma among caregivers of patients with bipolar disorder in the STEP-BD study

OBJECTIVE: Little is known about the factors contributing to mental illness stigma among caregivers of people with bipolar disorder. METHODS: A total of 500 caregivers of patients participating in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) study were interviewed in a cross-sectional design on measures of stigma, mood, burden, and coping. Relatives and friends with bipolar disorder were assessed on measures of diagnosis and clinical status, determined by a days-well measure derived from psychiatrist ratings of DSM-IV episode status. Because patients' clinical status varied widely, separate models were run for patients who were euthymic for at least three-fourths of the past year (well group) and for those who met criteria for an affective episode for at least one-fourth of the previous year (unwell group). Stepwise multiple regression was used to identify patient, illness, and caregiver characteristics associated with caregiver stigma. RESULTS: In the unwell group, greater mental illness stigma was associated with bipolar I (versus II) disorder, less social support for the caregiver, fewer caregiver social interactions, and being a caregiver of Hispanic descent. In the well group, greater stigma was associated with being a caregiver who is the adult child of a parent with bipolar disorder, who has a college education, who has fewer social interactions, and who cares for a female bipolar patient. CONCLUSIONS: Mental illness stigma was found to be prevalent among caregivers of persons with bipolar disorder who have active symptoms as well as for caregivers of those who have remitted symptoms. Stigma is typically associated with factors identifying patients as "different" during symptomatic periods. Research is needed to understand how the stigma experienced by caregivers during stable phases of illness differs from the stigma experienced during patients' illness states.     

Predictors of loneliness in caregivers of persons with Parkinson's disease

This study examined loneliness among caregivers of individuals with Parkinson's disease (PD). The sample included 70 caregivers (74% female; 96% spouses) who were currently living with the patient. A postal survey was sent to caregivers of persons with PD on the mailing list of a regional Parkinson association; response rate was 39%. Assessment instruments included the UCLA Loneliness Scale, Social Provisions Scale, Hoehn and Yahr (caregiver version), a perceived Self-Efficacy Scale developed previously for use with PD caregivers, and questions related to both patient and caregiver characteristics. Caregivers reported more loneliness than all similar normative groups except Alzheimer caregivers (P < 0.001 to P = 0.011). Hierarchical regression analyses were used to determine whether patient or caregiver characteristics were more predictive of loneliness. Results indicated that patient variables accounted for only 12% of the variance in loneliness, whereas caregiver variables accounted for an additional 46% of the variance (P < 0.01). Among the significant individual caregiver predictors of greater loneliness were less education, lower perceived self-efficacy (both P < 0.05) and poorer physical health (P < 0.01). It was also found that persons attending caregiver support groups reported less loneliness (P < 0.05) and more perceived support (P < 0.05) than those not attending support groups. Because loneliness was significantly predicted by caregiver rather than patient variables, it is possible that strategic interventions for caregivers could ameliorate loneliness.     

Stroke patients' informal caregivers. Patient, caregiver, and service factors that affect caregiver strain.

BACKGROUND AND PURPOSE: Research has revealed that caring for a stroke patient can result in caregiver strain and a myriad of other difficulties for caregivers. This study aims to identify the level of strain experienced by caregivers in the early months after stroke and to assess the relationship between caregiver strain and caregiver characteristics, patient characteristics, and service inputs. METHODS: Stroke patients were identified through a random stratified sample of general practices. Patients were asked to identify their principal informal caregiver. Strain was measured with the Caregiver Strain Index, and all data were collected from caregivers at 1, 3, and 6 months after the patient's stroke. Multiple regression analysis was used to examine the factors associated with caregiver strain. RESULTS: Six months after stroke, 37% of caregivers were experiencing considerable strain. The amount of time a caregiver spent helping a stroke patient, the amount of time the caregiver spent with the patient, and the caregiver's health were all significantly associated with the level of strain experienced. Although none of the services or patient factors tested in this study were consistently associated with strain, an indicator of stroke severity was significant at each time point. CONCLUSIONS: Caregivers are experiencing strain, which has implications for research and service provision. Service providers need to identify caregivers at risk of greater strain and to help caregivers work through situations that services cannot alter. Research is needed to identify services that are effective in strain alleviation. Future research should also aim to identify the interface between patient characteristics and strain, burden, and depression and particularly to assess the caregiver's perception of these relationships.     

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population

Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers.

Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted.

Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p?p?p?r?=??2.97). Presence of depression (p?r?=?0.381) was positively correlated and family caregiver role was negatively correlated (p?r?=??0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers.

Conclusions: The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.     

Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects

BACKGROUND: We assessed the objective and subjective burden of caregiving for stroke patients and investigated which characteristics of the patient, the informal caregiver and the objective burden contribute most to subjective burden and to the condition of feeling substantially burdened. METHODS: We studied a sample of 151 stroke survivors and their primary informal caregivers. We collected data through patient and caregiver interviews 6 months after stroke. RESULTS: Both the level of subjective burden and the condition of feeling substantially burdened were associated with both caregiver's and patient's health-related quality of life, patient's age, and the number of caregiving tasks performed. CONCLUSIONS: These conditions can be used in clinical practice to identify potentially vulnerable caregivers in need of support and at risk of adverse health effects. Monitoring stroke survivors as well as their family caregivers at discharge may help to prevent or alleviate caregiver burden.     

Social support and adjustment to caring for elder family members: A multi-study analysis

This multi-study analysis systematically examines research findings on relationships between social support and caregiver adjustment to discover whether informal support helps family caregivers. Caring for older relatives is an ongoing stressful life course event and role. Informal social support is often used as a predictor of caregiver adjustment outcomes. It is widely believed to enhance adjustment. Yet the varied research results do not necessarily support this belief. A computer-generated literature search of social sciences and medical databases produced thirty-five caregiving articles, published in refereed journals, which meet study parameters. A coding form was developed to categorize social support and adjustment variables for cross-tabular analyses. The findings show most relationships (61%) between social support and caregiver adjustment are not positively significant. Of the minority of positively significant relationships, neither perceived (available) nor received support is more important and neither instrumental nor socioemotional support is more likely to aid adjustment. Researchers and health care professionals need to explore the negative impact of social support and attributes of caregiver-care recipient relationships.     

Evaluating the outcome of interventions on quality of life in dementia: selection of the appropriate scale

BACKGROUND: A literature study was conducted to contribute to an adequate use of quality of life (QoL) instruments for the evaluation of interventions in dementia care by providing an overview of properties of QoL measures that acknowledge domains important to dementia patients. METHODS: Domains important to patients, and domains that professional caregivers in different settings focus on, are compared to domains represented in nine QoL instruments. Data on psychometrics and applicability are generated. RESULTS: Four instruments best represent domains of QoL important to patients and domains professional caregivers in 24-h care and daytime activities focus on. Two are self-rating instruments: Schedule for the Evaluation of Individual Quality of Life, applicable in mild dementia, measuring individual QoL of patient and informal caregiver, and Quality of Life-Alzheimer's Disease Scale, which can be applied up to moderately severe dementia. For patients with advanced dementia receiving residential care, the observational instruments Qualidem and Discomfort scale-Dementia of Alzheimer Type are recommended. The first is easily administered by nurse assistants or occupational therapists and covers several QoL domains on which they focus in daily practice. The second can be used by various professionals. CONCLUSIONS: QoL assessment provides a format for patients and (in)formal caregivers to express whether an intervention has made an important difference to the patient's life. Improvement of QoL in dementia should have high priority in care, treatment and research. This study shows that severity of dementia, care type, setting, and the specific QoL domains an intervention focuses on, determine which QoL instrument is most appropriate in a specific situation.     

The influence of stressors, appraisal and personal conditions on the burden of spousal caregivers of persons with dementia

OBJECTIVES: The aim of this study was to explore the main and mediating influences of stressors, a caregiver's appraisal, coping, personal conditions and social resources on the burden of dementia caregivers. METHOD: The study sample consisted of 95 spousal caregivers of non-institutionalized persons with dementia. A path-analytic approach was used to test the conceptual model. RESULTS: The most important factors that were related to burden were the social and behavioural problems of the person with dementia; perceiving the caregiver role as a threat; perceived instrumental support; and the caregiver's functional health status and self-efficacy. The results showed no support for the mediating role of appraisal and coping on the relationship between the demands of the caregiving situation and burden. CONCLUSION: Although we found insufficient support for the empirical tenability of the hypothesised model, this study revealed some new findings of practical interest. The relationships found suggest that it might be possible to reduce the caregiving burden by improving the social functioning of the person with dementia, the caregiver's perceptions and the caregiver's capacity to function in daily life.     

Predictors of positive and negative appraisal among Cuban American caregivers of Alzheimer's disease patients

OBJECTIVE: This study investigated predictors of positive (satisfaction) and negative (burden) appraisal among Cuban American (CA) caregivers of Alzheimer's disease (AD) patients. DESIGN: Cross-sectional study of AD patients and their family caregivers. SETTING: A university-affiliated outpatient memory disorders clinic. SUBJECTS: A convenience sample of 40 CA family caregivers of patients diagnosed with probable or possible AD according to NINCDS-ADRDA diagnostic criteria. MEASURES: AD patients: Mini-Mental State Examination (MMSE), Blessed Dementia Scale (BDS) and the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD). Caregivers: Caregiving Burden Scale (CBS), Caregiving Satisfaction Scale (CSS), Perceived Emotional Support scale (PES) and the Short Form-36 Health Survey-General Health Index (GH). RESULTS: Appraised burden was predicted by increased patient behavioral pathology, female caregiver gender and lower levels of perceived emotional support. The association between older caregiver age and increased burden approached significance. Older caregiver age and higher levels of perceived social support were shown to predict appraised satisfaction. Post-hoc analyses also indicated that length of residence in the United States, a measure of acculturation, was not associated with positive or negative appraisal. CONCLUSION: Appraised burden and satisfaction represent important outcomes of dementia care that show relations with distinct factors among CA caregivers. It is clear that further research is warranted in order to ascertain the relationship of ethnicity or culture to the process and psychological consequences of dementia caregiving. Continued investigations into predictors of caregiving satisfaction are also recommended.     

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients’ unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients’ illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.     

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients' unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients' illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.