Informal caregiver burden among survivors of prolonged mechanical ventilation

RATIONALE: Although caregiver burden is well described in chronic illness, few studies have examined burden among caregivers of survivors of critical illness. In existing studies, it is unclear whether the observed burden is a consequence of critical illness or of preexisting patient illness. OBJECTIVES: To describe 1-yr longitudinal outcomes for caregivers of patients who survived critical illness, and to compare depression risk between caregivers of patients with and without pre-intensive care unit (ICU) functional dependency. METHODS: Prospective, parallel, cohort study of survivors of prolonged (greater than 48 h) mechanical ventilation and their informal caregivers. Caregivers were divided into two cohorts on the basis of whether patients were functionally independent (n = 99, 59%), or dependent (n = 70, 41%) before admission. Functional dependency was defined as dependency in one or more activities of daily living or in three or more instrumental activities of daily living. Patient and caregiver outcomes were measured 2, 6, and 12 mo after mechanical ventilation initiation. MEASUREMENTS AND MAIN RESULTS: We studied three caregiver outcomes: depression risk, lifestyle disruption, and employment reduction. Most patients were male (59.8%), with a mean (SD) age of 56.6 (19.0) yr. Caregivers were mostly female (75.7%), with a mean (SD) age of 54.6 (14.7) yr. Prevalence of caregiver depression risk was high at all time points (33.9, 30.8, and 22.8%; p = 0.83) and did not vary by patient pre-ICU functional status. Lifestyle disruption and employment reduction were also common and persistent. CONCLUSIONS: Depression symptoms, lifestyle disruption, and employment reduction were common among informal caregivers of critical illness survivors. Depression risk was high regardless of patient pre-ICU functional status.     

Reduced employment in caregivers of frail elders: impact of ethnicity, patient clinical characteristics, and caregiver characteristics.

BACKGROUND: Without family caregivers, many frail elders who live at home would require nursing home care. However, providing care to frail elders requires a large time commitment that may interfere with the caregiver's ability to work. Our goal was to determine the patient and caregiver characteristics associated with the reduction of employment hours in caregivers of frail elders. METHODS: This was a cross-sectional study of 2806 patients (mean age 78, 73% women, 29% African American, 12% Hispanic, 54% with dementia) with at least one potentially working caregiver (defined as one who is either currently employed or who would have been employed if they had not been providing care) and their 4592 potentially working caregivers. Patients were enrollees at 11 sites of the Program of All-Inclusive Care for the Elderly (PACE). Social workers interviewed patients and caregivers at the time of PACE enrollment. Caregivers were asked if they had reduced the hours they worked or had stopped working to care for the patient. Nurses interviewed patients and caregivers to assess independence in activities of daily living (ADLs) and the presence of behavioral disturbances. Comorbid conditions were assessed by physicians during enrollment examinations. RESULTS: A total of 604 (22%) of the 2806 patients had at least one caregiver who either reduced the number of hours they worked or quit working to care for the patient. Patient characteristics independently associated with a caregiver reducing hours or quitting work were ethnicity, 95% confidence interval [CI] 1.14-1.78 for African American;, 95% CI 1.43-2.52 for Hispanic), ADL function below the median (, 95% CI 1.44-2.15), a diagnosis of dementia (, 95% -2.17 if associated with a behavioral disturbance;, 95% CI 1.06-1.63 if not associated with a behavioral disturbance), or a history of stroke (OR = 1.42, 95% CI 1.16-1.73). After controlling for these patient characteristics, caregiver characteristics associated with reducing work hours included being the daughter or daughter-in-law of the patient (OR = 1.69, 95% CI 1.37-2.08) and living with the patient (OR = 4.66, 95% CI 3.65-5.95 if no other caregiver lived at home, OR = 2.53, 95% CI 2.03-3.14 if another caregiver lived at home). CONCLUSIONS: Many caregivers reduce the number of hours they work to care for frail elderly relatives. The burden of reduced employment is more likely to be incurred by the families of ethnic minorities and of patients with specific clinical characteristics. Daughters and caregivers who live with the patient are more likely to reduce work hours than other caregivers. Future research should examine the impact of lost caregiver employment on patients' families and the ways in which the societal responsibility of caring for frail elders can be equitably shared.     

Correlates of depression and burden for informal caregivers of patients in a geriatrics referral clinic

Caregiver burden has been associated with patient dementia. In this study we tested the hypothesis that caregiver burden and depression are related to patient cognitive impairment. We analyzed records of 127 elderly male patients from a Veterans hospital geriatrics referral clinic. The patients and their informal caregivers had been referred to the clinic because the complexity and multiplicity of their problems were beyond the treatment capability of other clinics. There was a high prevalence of dementia (73%) and depression (69%) in these patients according to Diagnostic and Statistical Manual (DSM-III) criteria. Quantitative measures of patient dementia and dependency in activities of daily living were not statistically associated with measures of caregiver depression or burden. In contrast, measures of patient depression were significantly correlated with measures of caregiver depression and burden. We hypothesize that caregivers of chronically ill, elderly men cope better with physical and cognitive incapacity than with affective symptoms. Because caregiver support is the most important factor in maintaining a disabled elder in the community, we suggest evaluating patients and caregivers for depression as part of standard practice in geriatric clinical settings.     

Prevalence and outcomes of caregiving after prolonged (> or =48 hours) mechanical ventilation in the ICU

OBJECTIVES: (1) To estimate caregiver support required by patients 2 months after prolonged (at least 48 h) mechanical ventilation (MV) in an ICU; (2) to describe caregiver burden, caregiver depressive symptomatology, and caregiver limitations in activities; and (3) to investigate factors related to depressive symptoms at 2 months in caregivers. DESIGN: Prospective cohort study. STUDY PARTICIPANTS: Caregivers of 115 patients who received prolonged MV in an ICU. MEASUREMENTS: Sociodemographics, employment status, hours spent providing care, help from paid caregiving sources, caregiver burden, and caregiver depressive symptoms. RESULTS: The proportion of patients who survived at least 2 months and required caregiver support was 74.8%. The average age of caregivers was 52.9 years (SD, 14.2), 76.5% were women, and more than half were spouses (52.2%). Only 33 of the caregivers (28.7%) were working, and 30.3% had to reduce their time spent at work to provide care to the patient. The prevalence of risk of clinical depression (defined as Center for Epidemiological Studies depression scale [CES-D] score > or =16) among caregivers was 33.9%. The mean caregiver CES-D score was 13.2 (SD, 11; median, 10). Multiple linear regression analysis showed that higher CES-D score was associated with more hours per day helping with patients' activities of daily living and instrumental activities of daily living (p = 0.003). CONCLUSIONS: Two months after being placed on MV for at least 48 h, a high proportion of patients need caregiver support. Approximately 34% of caregivers are at risk of clinical depression. Many caregivers report lifestyle changes and burden when providing care for the patients.     

The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience

OBJECTIVES: To compare caregivers' ratings of Alzheimer's disease (AD) patients' global quality of life (QOL) using direct assessments and substituted judgments, and to identify qualities of the patients and their caregivers that are associated with these QOL assessments. DESIGN: Cross-sectional interviews. SETTING: A university-based Memory Disorders Clinic. PARTICIPANTS: Forty primary caregivers of AD patients. MEASUREMENTS: Direct scaling of overall quality of life (poor, fair, good, very good, or excellent) and measures of dementia severity, the caregiving experience, and patient and caregiver demographics. RESULTS: The majority of patients had mild (n = 20) or moderate (n = 11) AD. Caregivers' direct assessments of patient QOL were poor (5%, n = 2), fair (28%, n = 11), good (40%, n = 16), very good (20%, n = 8), and excellent (8%, n = 3). Twenty-one (52.5%) of the caregivers rated the patient's QOL the same as they thought the patient would; 12 (30.0%) rated the patient's QOL worse; and seven (17.5%) rated the patient's QOL better. Agreement between the two ratings was fair to moderate. Bivariate analyses showed that lower ratings of caregivers' direct assessments of patient QOL were associated with decreasing ratings of patient mental health and increasing dementia severity, caregiver burden, and caregiver depression. Multivariate models showed burden to be the significant predictor of caregivers' rating of patient QOL and the subscale measuring the caregivers' distress at controlling patient behavior had the strongest association with QOL. Lower ratings of substituted judgment assessments of patient QOL were associated with lower caregiver ratings of the patient's mental health. CONCLUSIONS: Nearly one-half of the caregivers of patients with predominantly mild to moderate AD assess a patient's QOL differently than they believe the patient would. Dementia severity and the caregiver's experiences of depression and burden negatively affect caregivers' assessments of QOL. These results provide a compelling reason why clinicians should take the time to screen for and address caregiver depression and burden and problematic patient behaviors.     

Perceived Burden of Thai Caregivers for Older Adults After Stroke

Perception of caregiver burden among stroke survivors varies based on socioeconomic and cultural backgrounds. The objectives of this study were to identify the burdens among Thai caregivers of older stroke survivors, characteristics of caregivers and severity of caregiver burden. Caregivers of older stroke survivors were randomly interviewed (March–June, 2012). Information on baseline characteristics and caregiver burden using Zarit Burden Inventory (ZBI) was collected. One hundred one participants were assessed. The mean ZBI was 21.6 ± 14.5 [95% CI, 18.7–24.8]. More than half of caregivers reported no burden (54.5%). High burdens were associated with low self-reported income, high numbers of basic activities of daily living needed and coexisting musculoskeletal conditions. The observed low degree of burden might be the result of the sociocultural view of the study participants.     

A comparison of caregivers for elderly stroke and dementia victims.

OBJECTIVE: To compare elderly co-resident caregivers of stroke and dementia patients on measures of burden and psychological morbidity. DESIGN: Cohort study. SETTING: Caregivers interviewed at home. SUBJECTS: Convenience sample, 99 co-resident caregivers of dementia and stroke patients registered with a community rehabilitation and geriatric service and who were 60 years or over. MAIN OUTCOME MEASURES: Caregiver burden as measured by self-administered questionnaire and subsequent interview, using the Relatives Stress Scale (RSS) and psychological morbidity as measured on the General Health Questionnaire (GHQ). RESULTS: Forty-six percent of caregivers had significant psychological morbidity (GHQ greater than 4). Mean RSS score was 12.2 (SD 5.4). No significant differences were found between stroke and dementia caregivers on these measures. Caregiver burden was significantly correlated with psychological morbidity in both caregiver groups. Behavior and mood disturbance in the patient was significantly correlated with burden (dementia caregivers r = 0.66; stroke caregivers r = 0.49, P less than 0.0001) and psychological morbidity (dementia caregivers r = 0.44, P less than 0.01; stroke caregivers r = 0.30, P less than 0.05). Caregiver's dissatisfaction with participation in life activities was correlated with burden (dementia caregivers r = 0.58; stroke caregivers r = 0.63, P less than 0.0001) and psychological morbidity (dementia caregivers r = 0.67, stroke caregivers r = 0.56, P, 0.0001). CONCLUSION: Elderly co-resident caregivers for stroke and dementia patients experience similar degrees of burden and high levels of psychological morbidity. Psychiatric aspects of chronic disability, rather than physical aspects, were found to be more stressful to caregivers. All assessments of the disabled elderly should include measures of caregiver burden and psychological distress.     

Dementia Caregivers' Most Pressing Concerns

This primary-care-based study was designed to determine needs as identified by the informal caregiver. A total of 165 caregivers identified selected topics of concern. Depressed caregivers requested more information about depression, adult day care, grief, caregiver feelings, and relaxation. Caregivers of individuals with mild dementia requested more information on confusion, driving, patient depression, shadowing, telling the patient and others, grief, and depression. Behavioral (activities, combativeness, communication, confusion) and stress (healthy lifestyle, grief, relaxation, depression) needs were similar across race, gender, and relationship. However, the clinical characteristics of caregivers (depression) and care recipients (cognitive impairment severity) affected behavioral and stress and coping needs.     

Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings

Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers’ and dependents’ characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan.     

Predictors of adherence to a skill-building intervention in dementia caregivers

BACKGROUND: Treatment adherence is a widely recognized problem in health services but understudied in caregiver intervention research. This study examines caregiver sociodemographic and psychological characteristics, patient illness severity, and treatment implementation factors as predictors of caregiver adherence to a skills training intervention to help families manage dementia care problems at home. METHODS: The sample consisted of 105 caregivers randomized to the Home Environmental Skill-Building Program at the Philadelphia site of the National Institutes of Health (NIH) Resources for Enhancing Alzheimer's Caregiver Health (REACH I). The intervention, implemented by occupational therapists, consisted of education, problem solving, communication, environmental and task simplification techniques, and home modifications. Adherence was measured by a proportion score representing the percentage of strategies used by participants compared to the total number of strategies prescribed during intervention (Strategy Use). RESULTS: Regression analysis with intraclass correlation adjustment for interventionist effects revealed that caregivers with better physical health (p <.001), greater treatment exposure (p <.001), more problem areas addressed (p =.012), and for whom more active therapeutic techniques (role play) were used (p =.004) demonstrated greater adherence. Other caregiver characteristics, patient cognitive impairment, and troublesome behaviors were not significantly related to caregiver adherence. CONCLUSIONS: Modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention, suggesting that efforts, including instruction in preventive care and allocating time to attend to their own health care needs, be directed towards improving their health.     

Stigma, burden, social support, and willingness to care among caregivers of PLWHA in home-based care in South Africa

Despite its benefits for people living with HIV/AIDS (PLWHA), home-based care (HBC) may have negative effects on caregivers. Caregivers experience high levels of burden and may be targets of HIV-related prejudice and discrimination. In this cross-sectional survey of 358 caregivers from five hospices across KwaZulu-Natal, South Africa, 49 (13.7%) caregivers personally experienced discrimination as a result of caring for PLWHA. One hundred and seventy (47.5%) marked one or more items on the HIV stigma scale. Eighty-eight percent had low to moderate levels of caregiver burden. People with higher level of burden and higher income were more likely to hold stigmatizing beliefs. Caregivers with the following characteristics: support from a nurse, support from community careworker, HIV stigmatizing beliefs, and personal experience of discrimination as result of caring for PLWHA and low caregiver burden, had more than twice the odds of wanting to care for another PLWA in the future. Overall, caregivers in HBC experience low level of severe caregiver burden. The support offered to caregivers from the hospice and relatively low levels of discrimination encourage expansion of HBC programs for PLWHA.     

Burden in caregivers of older adults with advanced illness

OBJECTIVES: To examine caregiver burden over time in caregivers of patients with advanced chronic disease. DESIGN: Observational cohort with interviews over 12 months. SETTING: Community. PARTICIPANTS: Caregivers of 179 community‐living persons aged 60 and older with advanced cancer, heart failure (HF), or chronic obstructive pulmonary disease (COPD). MEASUREMENTS: Caregiver burden was assessed using a short‐form of the Zarit Burden Inventory to measure psychosocial distress. RESULTS: At baseline, the median caregiver burden was 5 (interquartile range (IQR) 1–11), which indicates that the caregiver endorsed having at least two of 10 distressing concerns at least some of the time. Only 10% reported no burden. Although scores increased modestly over time, the association between time and burden was not significant in longitudinal multivariable analysis. High burden was associated with caregiver need for more help with daily tasks (odds ratio (OR)=23.13, 95% confidence interval (CI)=5.94–90.06) and desire for greater communication with the patient (OR=2.53, 95% CI=1.16–5.53). The longitudinal multivariable analysis did not yield evidence of associations between burden and patient sociodemographic or health characteristics. CONCLUSION: Caregiver burden was common in caregivers of patients with cancer, HF, and COPD. High burden was associated with the caregiver's report of need for greater help with daily tasks but not with objective measures of the patient's need for assistance, such as symptoms or functional status, suggesting that burden may be a measure of the caregiver's ability to adapt to the caregiving role.     

Predictors of the decision to yield care of a person with dementia

Objective: The aim of this study is to determine the relative contributions of caregiver and patient characteristics to the subsequent decision to yield care of a person with dementia. Method: The sample comprised 158 people with dementia and their spouse caregivers. The inclusion criteria were that the patient had a diagnosis of Alzheimer's disease, the patient and caregiver were both at least 65 years of age, were co‐resident, that the caregiver was the spouse of the patient, and was actively providing care. Caregiver measures were the Geriatric Depression Scale, SF36, Adelaide Activities Profile, self‐rated health, use of respite services and time as a caregiver. Patient measures were the Functional Dementia Scale, Adelaide Activities Profile, and time since diagnosis. Age and sex were also recorded. Data were obtained by personal interview with caregivers. Two years later, all caregivers were re‐contacted by telephone. At this time 60 (38%) were still providing care; the remaining 98 (62%) had yielded their role to formal institutional care, on average 11.2 months previously. Results: Caregiver characteristics significantly associated with yielding care included greater age, greater use of respite services, less social activities, poorer mental health and greater depression. Patient characteristics significantly associated with yielding care included greater dementia severity, lower activity level, and more frequent incontinence. Conclusion: Dementia severity was the key predictor of the decision to relinquish care. However, it is important to recognise the full range of factors that might indicate that a caregiver is in need of assistance and might be close to yielding the role.     

Physical disability contributes to caregiver stress in dementia caregivers

BACKGROUND: Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. METHODS: The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. RESULTS: Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. CONCLUSIONS: Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.     

Predicting caregiver burden and depression in Alzheimer's disease

OBJECTIVES: The purpose of this study was to investigate the predictors of caregiver burden and depression, including objective stressors and mediation forces influencing caregiving outcomes. METHODS: This investigation is based on the 1994 Canadian Study of Health and Aging (CSHA) database. Participants were 613 individuals with dementia, living in either the community or an institution, and their informal caregivers. Participants for the CSHA were identified by screening a large random sample of elderly persons across Canada. Structural equation models representing four alternative pathways from caregiving stressors (e.g., functional limitations, disturbing behaviors, patient residence, assistance given to caregiver) to caregiver burden and depression were compared. RESULTS: The data provided the best fit to a model whereby the effects on the caregiver's well-being are mediated by appraisals of burden. A higher frequency of disturbing behavior, caring for a community-dwelling patient, and low informal support were related to higher burden, which in turn led to more depressive symptomatology. Caregivers of patients exhibiting more disturbing behaviors and functional limitations received less help from family and friends, whereas those whose care recipients resided in an institution received more informal support. DISCUSSION: Our findings add to the preexisting literature because we tested alternative models of caregiver burden using an unusually large sample size of participants and after overcoming methodological limitations of past research. Results highlight the importance of the effective management of disturbing behaviors, the provision of formal services for caregivers with highly impaired patients and no informal support, and the improvement of coping skills in burdened caregivers.     

Patient and caregiver characteristics associated with depression in caregivers of patients with dementia

OBJECTIVE: Many patients with dementia who live at home would require nursing home care if they did not have the assistance of family caregivers. However, caregiving sometimes has adverse health consequences for caregivers, including very high rates of depression. The goal of this study was to determine the patient and caregiver characteristics associated with depression among caregivers of patients with dementia. DESIGN: Cross-sectional study. PARTICIPANTS AND SETTING: Five thousand six hundred and twenty-seven patients with moderate to advanced dementia and their primary caregivers upon enrollment in the Medicare Alzheimer's Disease Demonstration (MADDE) at 8 locations in the United States. MEASUREMENTS: Caregiver depression was defined as 6 or more symptoms on the 15-item Geriatric Depression Scale. Patient characteristics measured included ethnicity and other demographic characteristics, income, activities of daily living (ADL) function, Mini-Mental Status Exam (MMSE) score, and behavioral problems. Caregiver characteristics measured included demographic characteristics, relationship to the patient, hours spent caregiving, and ADL and Instrumental Activities of Daily Living (IADL) function. We used chi2 and t tests to measure the bivariate relationships between patient and caregiver predictors and caregiver depression. We used logistic regression to determine the independent predictors of caregiver depression. RESULTS: Thirty-two percent of caregivers reported 6 or more symptoms of depression and were classified as depressed. Independent patient predictors of caregiver depression included younger age (odds ratio [OR], 1.91; 95% confidence interval [CI], 1.33 to 2.76 in patients less than 65 years compared to patients over 85 years), white (OR, 1.53; 95% CI, 1.18 to 1.99) and Hispanic ethnicity (OR, 2.50; 95% CI, 1.69 to 3.70) compared to black ethnicity, education (OR, 1.16; 95% CI, 1.01 to 1.33 for those with less than a high school education), ADL dependence (OR, 1.55; 95% CI, 1.26 to 1.90 for patients dependent in 2 or more ADL compared to patients dependent in no ADL), and behavioral disturbance, particularly angry or aggressive behavior (OR, 1.47; 95% CI, 1.27 to 1.69 for patients with angry or aggressive behavior). Independent caregiver predictors of depression included low income (OR, 1.45; 95% CI, 1.18 to 1.77 for less than 10,000 dollars/per year, compared to >20,000 dollars per year), the relationship to the patient (OR, 2.73; 95% CI, 1.31 to 5.72 for wife, compared to son of male patient), hours spent caregiving (OR, 1.89; 95% CI, 1.51 to 2.38 for 40 to 79 hours/week compared to less than 40 hours/week), and functional dependence (OR, 2.53; 95% CI, 2.13 to 3.01 for ADL dependent compared to IADL independent). CONCLUSION: Caregiver depression is a complex process, influenced by ethnicity as well as diverse patient and caregiver characteristics. Efforts to identify and treat caregiver depression will need to be multidisciplinary and focus on multiple risk factors simultaneously.     

Falls in older people receiving in‐home informal care across Victoria: Influence on care recipients and caregivers

Aim: Older people receiving informal care at home appear at high falls risk. This study investigates frequency, circumstances and factors associated with falls risk for older care recipients, and their informal caregivers. Methods: Ninety‐six dyads, recruited from caregiver agencies, underwent a home assessment, including falls risk, function, depression, quality of life, self‐rated health and carer burden. Results: Care recipients were at high falls risk. In the past 12 months, 58% had fallen and 26% twice or more. Common falls risk factors were polypharmacy, multiple medical conditions and requiring functional assistance. Caregivers exhibited multiple health problems, moderate burden and reduced quality of life. Where care recipients had high falls risk, caregivers had significantly higher carer burden and depression. Low functional level and high care recipient health problems were independently associated with risk of falling (P < 0.05). Conclusion: Strategies to reduce falls risk in this cohort are necessary, together with supporting the needs of the caregiver.     

Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease

OBJECTIVE: To determine the effect of chronic obstructive pulmonary disease (COPD) on the quality of life of caregivers. DESIGN AND METHODS: A cross-sectional study was carried out with forty-two COPD patients and their primary caregivers. Patients were assessed with the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), Saint George's respiratory questionnaire (SGRQ), 6-min walking test, and spirometric and blood gas measurements. Caregivers were assessed using the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), the 5-point Likert scale for measuring caregiver/patient relationships and the caregiver burden scale (CB scale). RESULTS: The majority of caregivers were female (85.3%), married (59%) and had low levels of income and schooling. The mean age was 51.6+/-16 years. Mean caregiver PCS and MCS scores were 45.9+/-10 and 46+/-12, while the mean total burden score was 1.79+/-0.6. The regression analysis showed caregiver/patient relationship quality, caregiver MCS scores and patient PCS scores to be important predictors of burden and explained 63% of the variance. CONCLUSIONS: COPD causes a significant impact on the quality of life of caregivers. The two most important predictors of COPD burden are the relationship between caregivers and patients and caregiver MCS scores.     

The impact of metrifonate therapy on caregivers of patients with Alzheimer's disease: results from the MALT clinical trial. Metrifonate in Alzheimer's Disease Trial

OBJECTIVE: To assess the impact on burden reported by caregivers of patients with mild to moderate Alzheimer's disease (AD) who were treated with metrifonate during a randomized double blind clinical trial. DESIGN: Randomized clinical trial, with a 2-week screening period and a 26-week double blind, placebo controlled, treatment phase. Caregivers were assessed at baseline, at 12 weeks, and at end of trial. SETTING: Caregivers were interviewed at clinics as part of the assessment of the patients. PARTICIPANTS: Six hundred and three caregivers of AD patients who were enrolled in the MALT trial; 591 (98%) provided data suitable for analysis at baseline, and 546 (91%) provided data allowing for inclusion in the analysis of change scores. MEASUREMENTS: The Caregiver Burden Assessment consisted of the Screen for Caregiver Burden, including both subjective (SCB-subj) and objective (SCB-obj) scores; the cognitive subscale of Poulshock and Deimling (PD); an abridged version of the Relatives Stress Scale (aRSS); assessments of time spent in providing care, including the Caregiver Activity Time Scale (CATS); and demographic and background variables on both the patient and caregiver. RESULTS: Treatment of mild to moderate AD patients with metrifonate for a duration of 26 weeks significantly reduced the psychological burden of care to the caregivers, as measured by the SCB-subj, the PD, and the aRSS. There were no statistically significant differences on the measures assessing the time spent in caregiving, except for the caregiver's subjective impression of the change in time spent providing care during the trial. When comparing individual dose groups, most of the measures of burden showed the largest benefits in burden for the 60/80 mg group, followed by the 40/50 mg group, and then the placebo group. However, there was no statistically significant dose effect. CONCLUSIONS: This study provides the first evidence from a randomized clinical trial of any acetylcholinesterase inhibitor used in the treatment of AD demonstrating a positive impact on the patient's caregiver as well as benefits to the patient. These results were shown consistently across several measurement scales and were observed after six months of treatment. These findings reinforce the clinical significance of research that has shown that metrifonate has beneficial impacts on the cognitive, behavioral, and functional abilities of AD patients. Because caregiver burden is a leading factor in the decision for institutional care placement, the ability to favorably impact that burden through pharmacological treatment of the patient is important.