Health-related quality of life for caregivers of patients with Alzheimer disease

We investigated the relationship of caregivers' health-related quality of life (HRQOL) to the burden of caring for patients with Alzheimer disease (AD) and resource utilization. Caregiver HRQOL was assessed using the SF-12 Mental and Physical Summary scores. Compared with a normative, age-adjusted sample, the 2477 caregivers had lower mental and physical scores (for the latter, only those <54 years of age). Increased caregiver mental functioning was associated with caregiver support and perceived quality of patient medical care, fewer hours of caregiving, and fewer patient behavioral symptoms. The burden of caregiving has substantial effects on HRQOL. Interventions that improve AD status and reduce caregiving hours have the potential to improve caregivers' HRQOL.     

Emotional distress and quality of life in caregivers of patients awaiting lung transplant

OBJECTIVE: The aims of this study are to characterize the levels of emotional distress and quality of life among caregivers of lung transplant candidates and to examine the relation of coping styles and perceived caregiver burden to caregivers' self-reported emotional distress. METHODS: A consecutive series of primary caregivers of potential lung transplant candidates completed a battery of psychosocial measures, including the Beck Depression Inventory-II (BDI-II), State-Trait Anxiety Inventory, Medical Coping Modes Questionnaire (MCMQ), Scale for Caregiver Burden (SCB), and Medical Outcomes Survey, Short Form-36 (SF-36). RESULTS: Only 12 of the 82 caregivers (14.6%) who volunteered for the study reported clinically significant levels of depression (BDI-II > or =14), and only 2 caregivers (2.4%) reported clinically significant levels of anxiety (STAI > or =60). Passive coping strategies were associated with higher levels of emotional distress; specifically, resignation was associated with increased depression (r=.27, P<.04), while avoidance was associated with increased anxiety (r=.29, P<.04). In addition, caregivers who reported greater perceived caregiver burden experienced higher levels of depression (r=.45, P<.001) and anxiety (r=.43, P<.01). Moreover, the social functioning of caregivers of lung transplant patients was more than one standard deviation from a normative sample of the population (Cohen's d=1.16), indicating that caregivers of transplant patients experienced greater impairment in this area. DISCUSSION: Although most caregivers of transplant patients do not report significant impairment in functioning, assessing caregivers' coping strategies and caregiving burden may identify those caregivers who experience increased emotional distress.     

Emotional reactions and life changes of caregivers of demented patients when home caregiving ends

Many studies indicate that the cessation of caregiving of demented patients has positive effects on caregivers' lives but contradictory findings have also been reported. The aim of this study was to investigate how the caregivers of demented patients experienced the cessation of caregiving, how caregivers' lives changed after this event, and which factors predicted emotional reactions and life changes. Data were collected from 64 caregivers of demented patients, recruited from a previous controlled intervention study. The semi-structured telephone interviews sought (1) sociodemographic data, (2) emotional reactions the caregivers recalled from the point of cessation of caregiving, and (3) life changes experienced after that time point. At the point of cessation of caregiving, spouse caregivers had higher risk for loneliness, depressive feelings and sorrow than non-spouse caregivers. Feelings of relief were associated with non-spouses. Community care support obtained during the previous intervention study had protected the caregivers from loneliness, depressive feelings and sorrow. After the end of caregiving, spouse caregivers tended to experience more negative life changes. The increased number of leisure activities was associated with the support during community care.     

Caregiver burden in Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.     

Spouse caregivers of Alzheimer patients: problem responses to caregiver burden

This paper reports on comparisons of patterns of responses by 199 spouses of Alzheimer disease patients to stresses of functioning as caregivers. Focusing on gender and age of spouses, we examine effects of the total burden of caregiving and perceived patient problems on a set of emotional and social responses of caregivers. We also examine ways in which depressive symptoms and anxiety of spouse caregivers were associated with patterns of their responses to caregiving stresses. Total patient problem burden was most strongly associated positively with caregiver anger-resentment toward the patient, followed by caregiver concerns about personal time restriction and limitation of social life. Among individual areas of patient problems, emotional lability of the patient rather than cognitive impairment appeared strongest by far in affecting caregiver response measures. Negative impact of caregiving on their social life and associations appeared to have particularly marked effects on effects on caregiver depressive symptoms and anxiety scores. Spouse caregivers did not differ by age in clinically significant ways in their patterns of reaction to stresses of caregiving. The study suggests the importance of considering potential spouse caregiver reactions in such areas as anger and aggressive response to patients, the impact of feelings of social deprivation and personal sacrifice, as well as the implications of caregiving stresses for patient care and maintenance of family cohesion and quality of life.     

Burden,perceived health status,and mood among caregivers of Parkinson's disease patients

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross‐sectional study that included 289 patient–caregiver pairs was conducted. Caregiver self‐assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 ± 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health‐related quality of life (HRQol; EQ‐Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r_S = 0.01–0.28) with patient‐related variables (disease duration, HY, SCOPA‐Motor, SCOPA‐AUT, HADS, PPRS, and CISI‐PD) whereas the ZCBI correlated moderately (r_S = 0.27–0.47). Among caregivers, the EQ‐Tariff was significantly lower and the HADS‐Anxiety scores significantly higher for women. ZCBI and HADS‐depression, though not EuroQol and HADS‐anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient‐related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL. © 2008 Movement Disorder Society     

Depression in frail elders: impact on family caregivers

OBJECTIVES: To examine the relationship between depression among medically ill, frail elders and family caregivers' hours of care, health status, and quality of life. DESIGN AND METHODS: A cross-sectional study of 193 family caregivers of seniors treated in the emergency department (ED) was conducted. Measures included patient depression (Geriatric Depression Scale-15), and caregivers' hours of care, mental health and physical functioning (SF-36), and quality of life (EQ-5D). RESULTS: Mean caregiver age was 60.0 +/- 16.1 years and 70.5% were female. More caregivers of depressed seniors provided more care in the previous month (37.3% vs 22.4%, p = 0.03), had poor mental health (63.5% vs 47.0%, p = 0.03), and poor perceived quality of life (63.5% vs 50.4%, p = 0.04) compared to caregivers of non-depressed seniors. Multiple logistic regression analyses indicated that patient depression was associated with poor caregiver quality of life (OR = 3.15, 95% CI 1.48, 6.73), and poor mental health in spousal and adult child caregivers (OR = 2.72, 95% CI = 0.88, 8.39, and OR = 3.29, 95% CI = 1.10, 9.86, respectively). CONCLUSIONS: Psychosocial support may be needed for caregivers of depressed seniors.     

Family caregiving for patients with stroke. Review and analysis.

BACKGROUND: The literature on family caregiving for stroke patients is reviewed with the goals of (1) evaluating the effects of stroke caregiving on caregivers' well-being, (2) outlining deficiencies and methodological limitations of current research, and (3) outlining policy and practice implications of current studies. SUMMARY OF REVIEW: A total of 20 published stroke caregiving research articles were included in this review. Across studies, the effects of stroke caregiving on caregivers' well-being and the significant predictors of caregivers' depression were analyzed. Current evidence suggests that stroke caregivers have elevated levels of depression at both the acute stroke phase and the chronic stroke phase. However, major gaps are apparent in this literature, with few studies addressing such areas as caregiver physical health, ethnicity, and caregiver interventions. CONCLUSIONS: Given the increasing prevalence of stroke as well as the increasing pressures on families to provide care, more research is needed to guide policy and practice in this understudied topic.     

Understanding caregiver health behaviors: depressive symptoms mediate caregiver self-efficacy and health behavior patterns

Previous research on female caregivers of elderly relatives with dementia has demonstrated that caregiving self-efficacy (SE) is associated with reduced cumulative health risk. The overarching aim of the current study was to expand on that research by exploring whether depressive symptoms mediate the relationship between 3 domains of caregiving SE and cumulative health risk associated with health behavior patterns. Data from 256 female family caregivers of patients with dementia are presented. Path analysis revealed a significant mediated effect for depressive symptoms as both SE for obtaining respite and SE for controlling upsetting Thoughts had a significant, indirect effect on cumulative health risk. There were no direct effects between caregiver SE and cumulative health risk. The current study sheds light on the complex pathway between caregiver SE and health and speaks to the importance of skills-based interventions designed to enhance efficacy beliefs and minimize depression in dementia caregivers.     

The health status of family caregivers in Taiwan: an analysis of gender differences

BACKGROUND: Many studies have assessed the impact of caregivers' work activities on the caregiver. There is growing concern about the ever-increasing problems, both physical and physiological, faced by health care workers who provide care for the ill and incapacitated. AIM: The aim of the study was to examine what, if any, differences exist between male and female caregivers. This study primarily focused on caregivers who were taking care of a family member. METHOD: Three hundred and eighty-eight caregivers (280 females and 108 males) were recruited from 16 randomly selected home-care agencies in Southern Taiwan. The participants completed the Chinese Health Questionnaire-12 and the Self-Rated Health Scale. They also completed questionnaires drawn up specifically for the purpose of this study. RESULTS: Compared to the male caregivers, the female caregivers more often reported they suffered from symptoms of lack of well being, a decrease in psychosocial health and overall self-rated health. CONCLUSION: The results reiterate the importance of considering gender differentiation in the caregiving role. Major differences were found in the extent to which negative health consequences were experienced by the male and female caregivers. The results suggest that caregivers, especially female caregivers, urgently require adequate professional health care assistance in order to reduce the negative physical and physiological effects of caregiving on the health caregiver.     

What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?

OBJECTIVE: The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver. METHODS: A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life. RESULTS: Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life. CONCLUSIONS: Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.     

The experience of providing care to relatives with chronic mental illness

Research on family caregivers of mentally ill relatives has historically focused on negative aspects of caregiving, often described as caregiver burden. The authors document caregivers' perspectives on both the negative and positive aspects of caregiving. A qualitative approach was used. Data collection involved 20 in-depth, audiotaped, semistructured interviews focusing on caregivers' positive and negative personal experiences with caregiving to a relative with mental illness. Caregivers reported common negative impacts but also beneficial effects, such as feelings of gratification, love, and pride. Main themes included stigma, systems issues, life lessons learned, and love and caring for the ill relative. This study counterbalances the predominantly negative consequences previously reported and adds to the emerging literature on positive aspects of caregiving. Mental health professionals need to help caregiving families make choices to improve their challenging situations and identify the rewards of caregiving, and to advocate for increased systemic supports to ease caregiver burden.     

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.     

Subjective quality of life of family caregivers of community living Sudanese psychiatric patients

Background Reports on the quality of life (QOL) of family caregivers of psychiatric patients are uncommon. Objective The objective of this study was to assess the subjective QOL of caregivers of stable Sudanese outpatients using the World Health Organization 26-item Quality of Life Instrument compared with a general population sample, and assess the factors associated with caregivers' QOL. Method Responses of caregivers of outpatients with schizophrenia (99), major affective disorders (120), and neuroses (81) were compared with 211 general population subjects. Results Caregivers were satisfied with the items related to the strengths of the traditional society and dissatisfied with the items related to national economic indices. Schizophrenia caregivers had lower scores than the others (P>0.05) who scored significantly higher than general population subjects and patients. Parents had the least scores. Patients' variables were not significantly associated with caregivers' QOL. Caregivers' sociodemographic variables were significantly associated with QOL. Caregivers' QOL was predicted by their impression of patients and state of health. Schizophrenics had the least correlations with caregivers' QOL. Conclusion Caregivers who are women, parents, and sick seemed relatively vulnerable and need assistance. Their areas of dissatisfaction with material circumstances should be addressed in a social welfare program. Caregivers' inner strengths, extended family supports, and positive appreciation of the patients are resources for enhancing their caregiving role.     

Mental symptoms in Parkinson's disease are important contributors to caregiver distress.

OBJECTIVE: To determine the emotional and social distress of caring for a patient with Parkinson's disease and to explore the impact of motor and mental symptoms in subjects with Parkinson's disease on their caregivers' situation. DESIGN: Cross-sectional, population-based study using self-report questionnaires to measure caregiver distress and rating scales to assess patient symptomatology. SETTING: Neurology and old age psychiatry services in Stavanger, Norway. SUBJECTS: Caregivers of 94 home-dwelling patients with Parkinson's disease. Two control groups (patients with diabetes mellitus and healthy elderly). OUTCOME MEASURES: Measures of social and emotional distress in caregivers, including the Relative Stress Scale, Beck Depression Inventory and the General Health Questionnaire. RESULTS: Caregivers, in particular spouses, had more severe depression and a higher proportion reporting tiredness, sadness and less satisfaction with life compared with healthy elderly subjects. Using linear regression analysis, patient predictors of caregiver distress were depression, functional and cognitive impairment, agitation, aberrant motor behaviour and delusions. CONCLUSIONS: Caring for a spouse with Parkinson's disease is associated with emotional and social distress, underlining the importance of also assessing the needs of carers. Mental symptoms of parkinsonian patients were the most consistent and powerful predictors of caregiver distress, suggesting that identification and treatment of mental symptoms may reduce distress in caregivers of subjects with Parkinson's disease.     

Family caregiving of persons with dementia: prevalence, health effects, and support strategies.

The authors summarize the dementia caregiving literature and provide recommendations regarding practice guidelines for health professionals working with caregivers. Family caregiving of older persons with disability has become commonplace in the United States because of increases in life expectancy and the aging of the population, with resulting higher prevalence of chronic diseases and associated disabilities, increased constraints in healthcare reimbursement, and advances in medical technology. As a result, family members are increasingly being asked to perform complex tasks similar to those carried out by paid health or social service providers, often at great cost to their own well-being and great benefit to their relatives and society as a whole. The public health significance of caregiving has spawned an extensive literature in this area, much of it focused on dementia caregiving because of the unique and extreme challenges associated with caring for someone with cognitive impairment. This article summarizes the literature on dementia caregiving, identifies key issues and major findings regarding the definition and prevalence of caregiving, describes the psychiatric and physical health effects of caregiving, and reviews various intervention approaches to improving caregiver burden, depression, and quality of life. Authors review practice guidelines and recommendations for healthcare providers in light of the empirical literature on family caregiving.     

The emotional impact of psychiatric symptoms in dementia on partner caregivers: do caregiver, patient, and situation characteristics make a difference?

This study aims to investigate the emotional impact of psychiatric symptoms of patients with dementia on their caregiving partners, and to explore if caregiver, patient, and situation factors predict this emotional impact on caregivers. A cross-sectional design was used. Partners of patients with slight to moderately severe dementia who live in the community (n = 85) were interviewed. In a subgroup (n = 58) potential predictors of emotional impact of psychiatric symptoms on caregivers were studied. Agitation, irritability, apathy, and disinhibition produced the highest mean emotional impact scores in caregivers. Besides the neuropsychiatric symptoms themselves, the emotional impact of these symptoms on caregivers was predicted by sense of competence, degree of care needed by the patient, and financial expenditure due to the caregiving situation. The emotional impact of psychiatric symptoms on caregivers is predicted by several patient, caregiver, and situation factors. Interventions aimed at decreasing the experienced burden of caregivers should therefore not only focus on the psychiatric symptoms of the patient, but also on the sense of competence of the caregiver and the financial burden due to the caregiving situation.     

Falls of the elderly are associated with burden of caregivers in the community

BACKGROUND: Little attention has been paid to the impact on caregivers who provide care to a family member who has falls. The purpose of the current study was to determine whether falls of care recipients are associated with caregivers' burden. METHODS: A cross-sectional study of 1874 community-dwelling care recipients and 1478 caregivers was conducted. We examined the characteristics of care recipients and caregivers, including demographic characteristics, depressive mood as assessed by the Geriatric Depression Scale (GDS-15), the basic activities of daily living (bADL), fall history in the past 6 months, and physician-diagnosed chronic diseases to determine whether there was an association with caregivers' burden as assessed by the Zarit Burden Interview (ZBI). RESULTS: A total of 567 care recipients (30.3%) had a history of falls in the past 6 months. The mean ZBI score of caregivers with falls was significantly higher than that of caregivers without falls. There were negative correlations between the ZBI score and recipient bADL score and positive correlations between the ZBI score and GDS-15 scores of the recipient and caregiver, the level of severity of dementia, and the Charlson comorbidity index. Male recipient, fall history, behavioral disturbance, and dementia had significantly higher ZBI scores than those of controls. The stepwise multiple regression analyses found that the GDS-15 score of caregivers and recipients, level of severity of dementia, bADL score, and fall history were independently associated with the ZBI score. CONCLUSION: Among the community-dwelling frail elderly, falls are associated with caregiver burden even when controlling for various possible confounding factors.     

Positive aspects of caregiving: rounding out the caregiver experience

OBJECTIVES: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes. METHOD: This study used a national sample of caregivers derived from the Canadian Study of Health and Aging (part 2). Two hundred and eighty-nine caregivers caring for seniors living in the community were questioned about their experience of caregiving. Caregivers were asked whether they could identify any positive aspects related to their role, the type of positive aspects and to rate their feelings about caring. Using a conceptual model developed by Noonan and Tennstedt (1997), a staged stepwise multiple regression approach was used factoring the background/contextual variables, stressor variables (3 MS score, ADL limitations), mediator variables (positive aspects of caregiving, number of services used) and outcome variables (depression, burden and self-assessed health measures) into the model. RESULTS: Two hundred and eleven caregivers (73%) could identify at least one specific positive aspect of caregiving. An additional 20 (6.9%) could identify more than one positive aspect. Positive feelings about caring were associated with lower CES-D scores ( p<0.001), lower burden scores ( p<0.001) and better self assessed health ( p<0.001). CONCLUSION: Clinicians should inquire about the positive aspects of caregiving if they are to fully comprehend the caregiver experience and identify risk factors for negative caregiver outcomes.     

Impact of donepezil on caregiving burden for patients with Alzheimer's disease

Comprehensive Alzheimer's disease (AD) treatment should address caregiver well-being. We predicted that caregiver burden would be lower among caregivers of AD patients who received donepezil relative to caregivers of patients not treated with donepezil. A self-administered, nationwide survey of AD caregivers was used to match caregivers of patients treated with donepezil (n = 274) to caregivers of patients not treated with donepezil (n = 274). The Caregiver Burden Scale measured time demands and distress linked to commonly performed caregiving tasks. Respondents were three-quarters female, with an average age of 60 years. Results demonstrated that donepezil caregivers reported significantly lower scores on difficulty of caregiving. This difference remained when statistical controls for multiple patient and caregiver variables were imposed. However, selection factors must be recognized as a possible explanation for differences. The groups reported no difference on the time-demand subscale. In conclusion, better management of AD symptoms through donepezil treatment may reduce the burden of caregiving, providing physicians with a pharmacologic approach to improving quality of life for AD patients and their families.