The effect of rheumatoid arthritis on the quality of life of primary caregivers

OBJECTIVE: Rheumatoid arthritis (RA) is a chronic and disabling disease frequently leading to physical and psychological dependence, with considerable economic consequences. Responsibility for care of the patient is taken on by a member of the family called the primary caregiver. Studies of caregivers of patients with RA are scarce. A better understanding of the caregiver's situation could provide interventions that reduce the burden and postpone institutionalization of people with arthritis disability. Our objective was to assess the effect of RA on the quality of life of primary caregivers. METHODS: Sixty-two patients from the rheumatic disease outpatient clinic and their respective caregivers were interviewed. Demographic and clinical data were recorded. Health and psychological status were measured using the Health Assessment Questionnaire (HAQ), Medical Outcomes Survey Short Form 36 (SF-36), Self-Reporting Questionnaire (SRQ-20), and a numerical pain rating scale. Burden of disease on the caregiver was assessed by the Caregiver Burden scale (CB scale). RESULTS: The majority of caregivers were women (82.3%), married (59.7%), mean (SD) age of 39.7 (15.7) years, with children/son (32.7%) or spouse (24.2%), with low education level and low income. Thirty-seven percent displayed psychoemotional disturbance measured by SRQ-20. Emotional aspect and mental health (by SF-36) were the most affected. The mean (SD) score of total burden experienced was 1.82 (0.59). The quality of relationship between caregivers and patients and SF-36 mental health of caregivers were important predictors of burden. CONCLUSION: Caregivers of patients with RA show high prevalence of psychological disturbance. The quality of the relationship between caregivers and patients and the mental health of the caregiver are important predictors of the burden of disease.     

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.     

Caregiver burden and depression among informal caregivers of HIV-infected individuals

BACKGROUND: Few studies have examined the factors associated with depression in informal caregivers of HIV-infected persons. OBJECTIVE: To investigate the relationship between depression and caregiver burden among informal caregivers of HIV-infected individuals. DESIGN: Cross-sectional study using baseline data from an ongoing randomized trial of a supportive telephone intervention. PARTICIPANTS: One hundred seventy-six dyads of HIV patients and their informal caregiver. MEASUREMENTS: Depression was defined as a Beck Depression Inventory >10. A Caregiver Strain Index >6 identified informal caregivers with a high caregiver burden. We used logistic regression to identify characteristics that were associated with depression in the informal caregiver. RESULTS: Informal caregivers were 42 years old (SD, 13), 53% female, 59% nonwhite, and 30% had education beyond high school. Forty-seven percent of informal caregivers were the patient's partner, 18% a friend, and 35% a family member. Twenty-seven percent of informal caregivers had a high caregiver burden, and 50% were depressed. We found significantly greater odds of informal caregiver depression with high caregiver burden (OR, 6.08; 95% CI, 2.40 to 15.4), informal caregiver medical comorbidity besides HIV (OR, 2.32; 95% CI, 1.09 to 4.92), spending all day together (OR, 3.92; 95% CI, 1.59 to 9.69), having to help others besides the HIV patient (OR, 2.55; 95% CI, 1.14 to 5.74), and duration of the HIV patient's diagnosis (OR, 1.01 per month; 95% CI, 1.00 to 1.01). CONCLUSIONS: High caregiver burden was strongly associated with depression among HIV-infected individuals' informal caregivers, who themselves had difficult life circumstances. Informal caregivers of HIV patients may be in need of both mental health services and assistance in caregiving.     

Major depression among medically ill elders contributes to sustained poor mental health in their informal caregivers

BACKGROUND: No longitudinal studies have addressed the effect of late life depression on the physical and mental health status of their informal caregivers. OBJECTIVE: To examine whether a diagnosis of depression in older medical inpatients is associated with the physical and mental health status of their informal caregivers after 6 months, independent of the physical health of the care recipient. DESIGN: Longitudinal observational study with 6-month follow-up. SETTING: Two Montreal acute-care hospitals. SUBJECTS: A sample of 97 cognitively intact medical inpatients aged 65 and over and their informal caregivers, with oversampling of patients with a diagnosis of major or minor depression. METHODS: Patient data included depression (current diagnosis, duration of current diagnosis, severity of symptoms, and history of depression), physical health (severity of illness, comorbidity, premorbid disability), and cognitive impairment. Caregiver data included relationship to patient, co-residence, and the physical and mental health status subscales of the SF-36. Multivariate linear regression analyses were conducted to determine the relationship between patient depression and caregiver 6 month SF-36 physical and mental scores, adjusting for baseline values, patient comorbidity, disability, and other patient and caregiver variables. RESULTS: Patient characteristics included: mean age 79.3, 62% female, 46% major depression, 18% minor depression, 36% no depression. Caregiver characteristics included: 73% female, 35% co-resident spouse, 15% other co-resident relation, 50% not residing with the patient. Results of the multivariate analyses showed that in comparison with caregivers of patients without a current diagnosis of depression, caregivers of those with major depression had a lower mental health score at follow-up (-9.54, 95% CI -16.66, -2.43), even though their physical health was slightly better (5.42 95% CI 0.04, 10.81). CONCLUSIONS: A diagnosis of major depression in older medical inpatients is independently associated with poor mental health in their informal caregivers 6 months later.     

Association of care recipients’ care‐need level with family caregiver participation in health check‐ups in Japan

Aim

The public mandatory long‐term care insurance system in Japan has supposedly mitigated the care burden for family caregivers of older adults, whereas family caregivers still play a considerable role in providing care. The effect of informal caregiving on the caregiver's health has been of great interest. We investigated the relationship between the amplitude of informal caregiving and caregiver participation in health check‐ups in Japan.

Methods

The present study was a cross‐sectional analysis of nationally representative data in Japan (2010 Comprehensive Survey of Living Conditions). We investigated the relationship between care recipients’ care‐need level and in‐home caregiver participation in health check‐ups during the last year of the survey for caregivers.

Results

A total of 3354 caregiver/recipient pairs were included in the study. Crude proportions of caregivers completing a health check‐up by care‐need level were 68.4% (support required 1 and 2), 63.5% (care required 1–3) and 60.3% (care required 4 and 5). Higher care‐need level was negatively associated with caregiver participation in health check‐ups (support required 1 and 2as reference, care required 1–3: odds ratio 0.82, 95% confidence interval 0.75–0.90), care required 4 and 5: odds ratio 0.76, 95% confidence interval 0.74–0.79) after adjustment for possible confounders. Inclusion of the caregiver time devoted to care per day and caregiver self‐rating of health as independent variables did not change the result.

Conclusions

These results suggest that facilitating health check‐up participation for family caregivers of care recipients with higher care‐need levels might be an effective intervention for decreasing the gap in health behavior possibly caused by informal caregiving. Geriatr Gerontol Int 2018; 18: 26–32 .     

Costs of informal care in a sample of German geriatric stroke survivors

Stroke is a leading cause of long-term disability. A large proportion of geriatric stroke survivors receive informal care. The assessment and monetary valuation of informal care should therefore constitute an essential part of any health economic analysis, but it is hardly measured in stroke caregiver studies. The aim of the current research was to estimate the amount of informal care provided by caregivers of stroke survivors aged 60 years and older and to calculate its economic value. Information about caregiving time in activities of daily living (ADL), instrumental activities of daily living (IADL), and supervision during the last 3 months was obtained from 122 caregivers by means of structured interviews. The proxy good method was applied for the monetary valuation of time. About 63 % of the stroke survivors in our sample were moderately cognitively impaired. The results showed that the majority of the main caregivers assisted in ADL and IADL. Supervision was delivered by 45.9 %. The median amount of help in ADL was 13.9, in IADL 22.2, and in supervision 13.9 h/week. The median overall amount of care was 42.8 h/week. Fifty percent were supported by additional persons (2.7 h/week). The mean overall costs of informal care were calculated at 2252 €/month. Our results reveal the high social and economic costs of informal care. The main burden of caregiving appears to be carried by the primary caregiver. Consequently, support and counseling of this group is important. Furthermore, caregiver interventions should be aimed at the mobilization of informal resources.     

Caregiver burden and health-related quality of life among Japanese stroke caregivers

OBJECTIVE: the present study had two main purposes: 1. To examine the relationship between caregiver burden and health-related quality of life in family caregivers of older stroke patients in Japan; and 2. To examine which characteristics of the caregiving situation significantly relate to increased burden. METHODS: subjects (n=100) were recruited from seven randomly selected neurological hospitals with out-patient rehabilitation clinics in western Japan and interviewed using the Zarit Burden Interview, the Modified Barthel Index, the Geriatric Depression Scale and the SF-12 Health Survey for health-related quality of life. RESULTS: increased caregiver burden was significantly related to worsening health-related quality of life, particularly worsening mental health (Geriatric Depression Scale and SF-12 items), even after controlling for caregiver age, sex, chronic illness, average caregiving hours/day, and functional dependence of the care-recipient. DISCUSSION: findings indicate that increased burden significantly relates to decreased health-related quality of life among stroke caregivers. In addition, the prevalence of depressive symptoms among caregivers was twice that of community dwelling older people. Roughly 52% of caregivers had Geriatric Depression Scale scores that warranted further evaluation. Despite the prevalence of depressive symptoms only one caregiver had received any psychiatric care during their caregiving tenure.     

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.     

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.     

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.     

Caregiver burden in partners of Heart Failure patients; limited influence of disease severity

BACKGROUND: In complying with required life style changes Heart Failure (HF) patients often depend on their partners. However providing care may cause burden and affect the health of these partners. The aim of this study was to investigate determinants of caregiver burden in order to identify caregivers who are at risk. METHODS: Using a cross-sectional design, caregiver burden and potential determinants were measured in partners of HF patients. Demographic and clinical data were assessed in HF patients, partners completed questionnaires on caregiver burden (the Caregiver Reaction Assessment, CRA), caregiving tasks performed, physical and mental health status and quality of the marital relationship. RESULTS: In total 357 partners (75% female, mean age 67 years) participated. The physical health status of HF patients was only significantly associated with two domains of caregiver burden, 'disruption of daily schedule' (p<0.01) and 'loss of physical strength' (p<0.01). No associations were found with age, co-morbidity and LVEF. All domains of the CRA were mainly associated with the partner's own mental health (p<0.01) and with providing personal care to HF patients (p<0.01). Gender differences were only found with regard to the domain of 'feeling a lack of family support'. CONCLUSION: The assessment of caregiver burden should focus on the mental strength of partners. Furthermore when assistance in personal care is needed, additional support, either informal or professional, may be indicated.     

A survey of caregiver burden for stroke survivors in non-teaching hospitals in Western China

The social factors that moderate stroke caregiver burden have been found to be culture- and gender-specific. We examined the factors that influence the social support and self-efficacy of caregivers of stroke survivors and the burden of caregiving in China. To determine the caregiver burden of stroke survivors, their social support, and their self-efficacy. A total of 328 stroke survivors and their caregivers were recruited from 4 tertiary medical centers to participate in this cross-sectional study. The sociodemographic and stroke-related characteristics of the participants were obtained. Perceived social support and self-efficacy were assessed using the Social Support Rating Scale and General Self-efficacy Scale, respectively. Caregiver burden was assessed using the Zarit Burden Interview Scale. Relationships between the variables were assessed using Pearson’s correlation, the chi-square test, and a paired t test. A total of 27.4% of the caregivers reported receiving adequate social support, while 20.7% reported high levels of self-efficacy. A total of 67.1% of the caregivers experienced varying degrees of care burden, while the remaining 32.9% felt no burden. Participants’ sociodemographic characteristics (age, daily care time, self-rated health, and financial situation) were significantly related to caregiver burden, social support, and self-efficacy (P < .001). The findings indicate an inverse relationship between caregiver burden, social support and self-efficacy. Adequate social support and self-efficacy can reduce stroke caregivers’ burden. Hospital departments should provide assistance to stroke caregivers through educational programs and group training to increase their social support and self-efficacy, thereby alleviating their burden.     

Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis

PURPOSE: We investigated ethnic differences in caregiver background variables, objective stressors, filial obligations beliefs, psychological and social resources, coping processes, and psychological and physical health. DESIGN AND METHODS: We used a meta-analysis to integrate the results of 116 empirical studies. RESULTS: Ethnic minority caregivers had a lower socioeconomic status, were younger, were less likely to be a spouse, and more likely to receive informal support. They provided more care than White caregivers and had stronger filial obligations beliefs than White caregivers. Asian-American caregivers, but not African-American and Hispanic caregivers, used less formal support than non-Hispanic White caregivers. Whereas African-American caregivers had lower levels of caregiver burden and depression than White caregivers, we found that Hispanic and Asian-American caregivers were more depressed than their White non-Hispanic peers. However, all groups of ethnic minority caregivers reported worse physical health than Whites. Observed ethnic differences in burden and depression were influenced by study characteristics, such as the type of illness of the care recipient and the representativeness of the sample. IMPLICATIONS: The results suggest that more specific theories are needed to explain differential effects of ethnic minority groups of caregivers. Intervention needs vary, in part, between ethnic groups of caregivers.     

Changes in adult child caregiver networks

PURPOSE: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. DESIGN AND METHODS: The study relied on pooled data from Waves 1 through 5 of the Health and Retirement Study. Based on a matrix of specific adult child caregivers across two consecutive time points, we assessed changes in any adult child caregiver as well as in the primary adult child caregiver. RESULTS: More than half of all adult-child care networks, including more than one fourth of primary adult child caregivers, changed between waves. Gender composition of the caregiver network and availability of other adult child caregivers were particularly important for network change, but socioeconomic context, caregiver abilities and resources, and caregiver burden played a role as well. IMPLICATIONS: The results underline the need to shift caregiving research toward a dynamic life course and family systems perspective. They also raise concerns about the viability of informal care networks for future smaller birth cohorts and suggest that health care providers need to recognize and address coordination and potential conflicts among care network members.     

The long‐term impact of severe acute respiratory syndrome on pulmonary function,exercise capacity and health status

Background and objective: Severe acute respiratory syndrome (SARS) emerged in 2003 and its long‐term sequelae remain largely unclear. This study examined the long‐term outcome of pulmonary function, exercise capacity, health and work status among SARS survivors. Methods: A prospective cohort study of SARS patients at the Prince of Wales Hospital, Hong Kong was conducted, with serial assessments of lung function, 6MWD and 36 item Short Form General Health Survey at 3, 6, 12, 18 and 24 months after disease onset. The work status was also recorded. Results: Serial assessments were completed by 55 of the 123 (39.9%) subjects, of whom 27 were health‐care workers (HCW). The mean age of the group was 44.4 (SD 13.2) years and 19 (34.5%) were males. At 24 months, 10 (18.2%), 9 (16.4%), 6 (10.9%) and 29 (52.7%) subjects had FEV₁, FVC, TLC and DL_CO < 80% of predicted values, respectively. The mean (SD) 6MWD increased significantly from 439.0 (89.1) m at 3 months to 460.1 (102.8) m at 6 months (P 0.016) and became steady after 6 months. However, 6MWD and 36 item Short Form General Health Survey scores were lower than the normal population throughout the study. Moreover, 29.6% of HCW and 7.1% of non‐HCW had not returned to work 2 years after illness onset. Conclusions: This 2‐year study of a selected population of SARS survivors, showed significant impairment of DL_CO, exercise capacity and health status persisted, with a more marked adverse impact among HCW.     

Effects of an exercise intervention for older heart failure patients on caregiver burden and emotional distress.

BACKGROUND: The impact of exercise programmes for heart failure on those close to the patient is largely unknown. We examined the effect of a hospital and home-based exercise intervention on burden, anxiety and depression of informal caregivers. DESIGN: The study was a randomized, controlled trial. Heart failure patients were randomized to a seated 12-week hospital-based exercise programme. Caregiver measures were gathered at baseline, 3 months later and 6 months following baseline. METHODS: Sixty caregivers (mean age 63.4 years, 65% female) of heart failure patients (n = 82, mean age 80.5 years, 44% female) participating in a trial of an exercise intervention were recruited. Caregiver burden, anxiety and depression were assessed. RESULTS: There were no differences in caregiver burden, depression or anxiety between the two groups of caregivers at baseline (caregiver burden, patient control 33.1 versus patient exercise 34.1; anxiety 4.1 versus 5.5; depression 2.8 versus 3.8). At 3 months there were no differences between caregivers in the two groups on outcomes. At 6-month follow-up caregivers of heart failure patients in the exercise group had burden scores that were significantly worse than the control group. There were no differences between the carers of exercise and control groups in anxiety and depression. Levels of anxiety and depression in the entire carer sample were marginally higher than reference values in a healthy non-clinical sample. CONCLUSION: The present exercise interventions for frail older patients did not benefit caregivers and was associated with an increase in caregiver burden. We suggest that future exercise interventions for heart failure patients should actively incorporate informal caregivers into research designs.     

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.     

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N = 55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty‐six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty‐two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training.     

Caregivers of persons with Alzheimer's Disease: Cultural differences in perceived caregiver burden in Guatemala and Rhode Island

The intent of this study is to illustrate cultural differences in the amount of perceived burden for primary caregivers of persons with Alzheimer's Disease. Caregivers in Guatemala and Rhode Island were given a questionnaire exploring: caregiver well-being, available supports, traditional ideology, and perceived burden. The data indicate that Guatemalans have less institutional and more informal supports available, as compared with USA caregivers. Guatemalan caregivers brought patients to a doctor sooner after the appearance of their first symptoms (0.9±1.0 years versus 1.6±1.8 years) and had poorer perceived health than USA subjects, suggesting a higher level of caregiver burden. Cultural response bias however may account for the difference in perceived health.