Caregiver Burden: The Strongest Predictor of Self-Rated Health in Caregivers of Patients With Dementia

Journal of Geriatric Psychiatry and Neurology 2014, Vol. 27(3) 172-180 ª The Author(s) 2014 Reprints and permission: DOI: 10.1177/0891988714524627

Ibrahim Abdollahpour, MSc, PhD1,2, Saharnaz Nedjat, MD, PhD3, Maryam Noroozian, MD4, Yahya Salimi, MSc, PhD2,5, and Reza Majdzadeh, DVM, PhD3

Abstract Objective: People having dementia need help and supervision to perform their activities of daily living. This responsibility is usually imposed on family members who endure a great burden, leading to undesirable health outcomes. The aims of our study were to measure caregivers’ health as well as identify its adjusted relevant predictors. Methods: One hundred and fifty three registered patients and their caregivers from Iranian Alzheimer Association were included in this cross-sectional study through sequential sampling. Self-rated health (SRH) was measured using a single question with Likert-type scale ranging from very bad (1) to very good (5). The multiple linear regression model was applied to determine the adjusted associations between independent variables under study and SRH. Results: The mean caregiver SRH level was 3.03. Of the participant caregivers, 29% were either unsatisfied or very unsatisfied with their health level. In the final regression model, SRH showed a direct significant association with the patient’s number of children but an inverse significant association with the marital status (married patients), patient’s age, and caregiver burden. Conclusions: Caregiver burden was not only significantly associated with poor SRH after removing the effect of the other covariates but it was also recognized as the strongest predictor of caregivers’ SRH. Therefore, it seems that development of intervention programs, in order to reduce caregiver burden, can be considered as important step in promoting caregivers’ health level. Keywords self-rated health, caregiver burden, dementia, Alzheimer’s, Iran

Introduction Population aging, one important result of demographic transitions, is considered to be associated with the increasing prevalence of elderly diseases such as dementia.1,2 In 2010, 35.6 million patients with dementia were estimated to exist across the world. This figure is expected to double every 20 years, rising up to 65.7 million in 2030 and 115.4 million in 2050.3 Long duration, intensive outcomes, and high therapeutic expenses especially in developing countries like Iran along with physical, financial, and emotional burden imposed on the patient’s family members4-6 have introduced dementia as an important global health issue.7 Simultaneously, clinical consequences such as language dysfunction, behavioral and psychological symptoms, and dependency in activities of daily living (ADL),2 as well as progressive impairment in memory and other cognitive domains,4,8 have made the patients’ dependency to caregiver inevitable.8,9 Caring for patients with dementia usually imposes a crucial responsibility and challenges on informal (family) caregivers. These obligations force a great burden upon them4,10 and enforce limitations in their personal and social roles.8

The average proportion of patients with dementia living at home is 66% and 94% in high- and low/middle-income countries, respectively.11 Meanwhile, in 2010, 58% of the entire population with dementia lived in low or middle income countries. This proportion is expected to increase to 71% by 2050.11


School of Public Health, Arak University of Medical Sciences, Arak, Iran Department of Epidemiology and Biostatistics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran 3 Department of Epidemiology and Biostatistics, School of Public Health, Knowledge Utilization Research Center, Tehran University of Medical Science, Tehran, Iran 4 Memory and Behavioral Neurology Department, Roozbeh Hospital, Tehran University of Medical Science, Tehran, Iran 5 Epidemiology and Biostatistics Department of Public Health School, Kermanshah University of Medical Science, Kermanshah, Iran 2

Received 6/7/2013. Received revised 12/18/2013. Accepted 12/11/2013. Corresponding Author: Ibrahim Abdollahpour, Department of Epidemiology and Biostatistics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran. Email: [email protected]

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The population of Iran, as one of the largest countries in the middle east, is more than 75 million right now. Its population growth rate and ‘‘life expectancy at birth’’ are 1.24 and 70.35 years, respectively.12 The elderly individuals constitute more than 5.1% of Iran’s population12 and it is expected to exceed 21% in 2050, respectively.13,14 Estimates, up to 2009, suggest that currently there may be more than 212 000 patients with dementia in the country.6 The most recent data showed that Alzheimer/dementia-related deaths had reached 1.43% of the total death and rank 12th among the top 20 causes of death. Meanwhile, the age-adjusted death rate is 11.43 per 100 000, placing Iran at the 26th rank of the world.15 Public knowledge about dementia is still inadequate in our country; there are few qualified day care centers for the elderly patients and it has not become a main policy-making priority yet.16 While, dispatching the aged to these centers is still a taboo in Iran’s cultural context. These aforementioned characteristics can clearly reflect the critical situation of dementia in Iran. Among health indicators, self-rated health (SRH) has been recognized as a strong predictor of mortality,17-21 morbidity,22 and future health problems.18-23 Literature has shown that although SRH cannot be considered the same as clinical health evaluations, it still has the ability to simultaneously measure the physical, social, and mental aspects of health.24 Simplicity, briefness, globalization,25 validity, and reliability26,27 along with strong predictive power21,28 have been identified as the other properties of SRH. Therefore, SRH is regarded as a prevailing health assessment tool in epidemiologic studies.17,18,20,29 It has also been used to capture changes in health following interventions and educational programs, in spite of doubts regarding its validity.30,31 However, there are studies showing that when compared with the general population, caregivers have higher levels of depression and stress.32-34 Higher rates of mortality and morbidity as well as comorbidity with sleep disorders and illnessrelated symptoms have drawn even more attention to caregivers’ health.32,33,35,36 Nonetheless, little attention has been paid to the adjusted association between the health status of caregivers of patients with dementia and its predictors.37 Hence, this study has been conducted to estimate caregivers’ health and to determine the adjusted association of SRH with relevant clinical and sociodemographic predictors in the caregivers of patients with dementia in Iran.

Methods Study Design and Sample At the time of conducting the study, 894 patients had been registered in the Iran Alzheimer Association (IAA). Of these, 153 registered patients and their caregivers were included in this cross-sectional study using the sequential sampling method. The patients visiting the IAA daily were included in the study upon their caregivers’ informed consent. Sampling continued up to the point where the sample size was deemed adequate. Inclusion criteria for the respondents consisted of the following: close family relationship between the caregiver and patient (patients with a

formal caregiver or friend as their main caregivers were excluded , lack of any cognitive or major psychiatric disorder (eg, dementia) or any mental disability, dedicating at least 6 hours per day to the patient’s caregiving. In cases where the patient had more than 1 caregiver, the one who spent more time in patient care was selected as the primary and main caregiver.

Measures The data collection tools consisted of the following: Iranian caregiver burden questionnaire,38 Global Deterioration Scale (GDS),39 Barthel index,40 and sociodemographic checklists. In addition, an SRH question with 5 possible answers was used to measure the caregiver’s SRH level. The above-mentioned questionnaires contained the following data: We used the Iranian caregiver burden questionnaire to measure the caregiver burden. This is a 29-item questionnaire validated in accordance with the cultural characteristics of Iranian patients and caregivers. Its attainable score range is 0 to 116. It has shown acceptable content validity and reliability (considering the reproducibility and intraclass correlation coefficient [ICC] components) in Iran. As content validity indicators, the relevancy, clarity, and comprehensiveness were 98.6%, 99.3%, and 100% respectively; whereas, ICC indicators and Cronbach a were 0.97 and 0.94, respectively.38 The Barthel index was used to evaluate a patient’s dependency level in performing ADL (10 activities). This tool has shown high validity and reproducibility.40 The Persian version of this questionnaire was prepared using backward–forward translation, under the supervision of neurology and English language experts. To determine the stage of disease, the GDS tool was used. This tool divides dementia into 7 stages: no cognitive impairment, very mild cognitive decline, mild cognitive decline, moderate cognitive decline, moderately severe cognitive decline, severe cognitive decline, and very severe cognitive decline. An SRH question was used as an indicator to measure general health status level.18,23,24,28,41,42 The question was proposed as ‘‘How satisfied are you with your health?’’ and had 5 Likert-type scale-like response options ranging from score 5 to 1 (very satisfied, satisfied, neither satisfied nor unsatisfied, dissatisfied, and very dissatisfied).26,41 The sociodemographic questionnaire contained the following information: caregiver and patient’s age, gender, marital status (married, unmarried [single, widowed, or divorced]), caregiver’s familial relation to the patient (spouse, son, daughter, daughter-in-law, or grandchild), whether caregiver lived with the patient or not, patient’s living situation (alone, with spouse or children), patient’s residential status (own home, family members’ home or both), and finally the patient’s insurance status (insured or not insured). At the same time, this questionnaire was also used to answer the following questions: patient’s number of children, patient’s number of caregivers, and finally, the education years of both patient and caregiver. Data collection for these questionnaires was based on information given by the main caregivers during their interviews.

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The GDS questionnaires were filled out by 2 experienced neurologists, while a trained questioner completed the rest through interviews with the caregivers. Results obtained from these data have been published in another article.43

average and above (86-116) during the caregiving period.43 Of the patients, 90% were insured by either the Iran Health Insurance Organization or the Social Security Organization, and only 10%were not insured.

Data Analysis

Factors Associated With the SRH Level

Principal component analysis was used to combine asset variables and generate a socioeconomic status variable. Principal component analysis classifies the socioeconomic status of the population under study into 5 groups, which is neither relative nor absolute.22,44-47 This variable was divided into quintiles ranging from very poor to very rich. In this study, meeting the assumptions of parametric tests such as normal distribution of the outcome variable provided the possibility of using the parametric tests such as t-test, analysis of variance, and correlation to determine the association of the mentioned variables with SRH in bivariate analysis. Multiple linear regression was also used (according to establishment of the required assumptions) to determine the adjusted association of the independent variables with SRH. Those variables that exhibited lower than 0.2 significant levels of association with SRH in the bivariate analysis were considered in the multiple regression.48 The backward model was also used to fit the final model.

Bivariate analysis. Table 2 illustrates the associations between the independent variables and SRH along with their corresponding P values in the bivariate analysis.

Results Descriptive Analysis The characteristics of the study’s participants along with summarized information on the main variables have been illustrated in Table 1. The mean age of reference population was 76.7 and 42.3% were males. Their age and gender distribution did not show a significant difference with the study population. As shown in this table, of the 153 participating patients in the study, 63 (41.2%) were men and the rest were women. The mean (standard deviation [SD]) age of the patients and their caregivers were 77.1 (7.4) and 53 (13), respectively. Patients’ spouses comprised 31.4% of caregivers, which is less than the worldwide average (41%).11 Furthermore, the median value for each patient’s number of caregivers was 2 and the median of the grade of disease was 5. Among the patients, 71 (46.4%) individuals lived alone. The mean caregiver SRH was 3.03 while its median and mode values were both 3. Among the caregivers, 44 (29%) individuals were either unsatisfied or very unsatisfied with their state of health while 55 (nearly 36%) individuals were neither satisfied nor dissatisfied. The mean (SD) grade of disease, Barthel index, and caregiver burden were 5.4 (1.13), 65.3 (30), and 55.2 (23.7) respectively, while their attainable ranges were 2 to 7, 0 to 100, and 0 to 116, respectively. As shown in Table 1, the mean numbers of caregivers and children for each patient were 2.7 and 4.8, respectively, while their domains ranged from 1 to 8 and 0 to 10, respectively. Among the caregivers in this study, 50% endured a burden of

Multivariable analysis. According to the bivariate associations (Table 2) and their corresponding P values (lower than 0.2), we included the following variables in the regression model48: caregiver burden, caregiver’s relationship with the patient, patient’s gender, caregiver living with the patient, patient’s marital status, patient’s education years, patient’s living situation, patient’s number of children, patient’s insurance status, patient’s residential status, caregiver’s age, caregiver’s employment status, per capita education years of the patient’s family, each patient’s number of caregivers, Barthel index, and stage of illness. Using the backward method to fit the final regression model, the 5 demonstrated variables in Table 3 remained in the final proposed model. Table 3 shows the adjusted association of caregiver burden along with the other measured variables with SRH as the dependent variable. As seen in this table, the caregiver burden’s association with SRH level was significant (P < .001) such that for each increase in caregiver burden score, the SRH level showed an average decrease of 0.023 units. At the same time, the SRH level showed a direct significant association with the patient’s number of children (P ¼ .014) and patient’s marital status (unmarried patients; P < .001) but an inverse significant association with the patient’s age (P < .001). These variables explained 42% of the total SRH variance (adjusted R2 ¼ 0.42). As shown in Table 3, the largest standardized regression coefficient among the proposed predictors of SRH can be attributed to caregiver burden.

Discussion Typically, the physical, mental, financial, and social burden imposed on family members of patients with dementia deeply affects their ordinary activities and daily lives.8 This is the convincing reason for why patients with dementia are not the only ones affected by dementia. Therefore, considering caregiver’s health, as well as identifying associated factors, can be of special importance. There are slight differences in the wording and scaling of SRH questions in the existing literature. Nonetheless, they offer similar assessment of health.49,50 Self-rated health question used in this study is the one presented by the World Health Organization.51 The availability of SRH-related data, its simple application as well as its easy understanding for caregivers led to its application for assessing this group’s health. Although SRH has been recognized as a reliable, convenient, available,

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Table 1. Distribution of Clinical and Sociodemographic Variables of Participating Patients With Dementia and Their Caregivers.a Patients With Dementia; Mean (SD)

Main Caregivers; Mean (SD)

– – 65.3 (30)b 5.4 (1.13) 77.1 (7.4) – 4.77 (2)

3.03 (0.95)b 55.2 (23.7)b –

Quantitative variables SRH level Caregiver burden Barthel index GDS Age, years Number of caregivers Number of children Categorized variables, number (percent) Gender (male-female) Marital status Married Unmarried (single, widowed, divorced) Caregiver’s relation with the patient Spouse Daughter Son Daughter-in-law or grandchild GDS 2 and 3 4 5 6 7 Living with the patient (yes) Patient’s living situation With spouse With relatives Alone Patient’s residential status Own home Relatives’ home Sometimes at own home, sometimes at relatives’ home Caregiver’s employment status: Employed Other (unemployed, housekeeper, retired) Insurance status (insured, not insured) Financial status of the caregiver’s family Very rich Rich Neither rich nor poor Poor Very poor Caregiver SRH level Very satisfied Satisfied Neither satisfied nor dissatisfied Dissatisfied Very dissatisfied

63-90 87 (56.9) 66 (43.1) – – – –

53 (13) 2.74 (1.7) – 26-127 123 (80.4) 30 (19.6) 48 69 19 17

(31.4) (45.1) (12.4) (11.1)

8 (5.2) 22 (14.5) 46 (30) 50 (32.6) 27 (17.7) –

– – – – – 109

1 (0.6) 81 (53) 71 (46.4)

– – –

116 (75.8) 30 (19.6) 7 (4.6)

– – –

– – 137 - 16

37 (24.2) 116 (75.8) –

– – – – –

31 30 31 30 31

(20.2) (19.7) (20.2) (19.7) (20.2)

– – – – –

4 (2.6) 50 (32.7) 55 (35.9) 35 (22.9) 9 (5.9)

Abbreviations: GDS, Global Deterioration Scale; SD, standard deviation; SRH, self-rated health. a N ¼ 153. b The attainable range is 1 to 5 for caregiver SRH level, 0 to 116 for caregiver burden, and 0 to 100 for the Barthel index.

and flexible tool, there is still a degree of uncertainty regarding the validity of this subjective health tool. Hence, it has drawn researchers’ attention to the limitations and weaknesses of SRH as a repeated health outcome measure.52 In spite of these doubts, some believe that SRH can be applied efficiently to

assess behavior-changing programs and interventions, changes in health and changes in disease30,31,53,54 may even be a valid tool for assessing the effectiveness of certain therapeutic interventions.30,31 For example, Duberg et al, in their randomized controlled trial study conducted on teenage girls used SRH as

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Table 2. The Bivariate Analysis of Independent Variables and Caregiver SRH. Independent Variable


Caregiver burden Caregiver’s relationship with the patient:

– Spouse Daughter Son Daughter-in-law or grandchild Men Women Yes No Married Other: single, widowed, divorced – Alone With spouse or children

Patient’s gender Caregiver living with the patient Patient’s marital status Patient’s education years Patient’s living status Patient’s number of children Patient’s insurance status

Caregiver Burden Mean

SRH Mean

66.53 (23) 53 (23) 44.3 (22.1) 47.2 (18) 58.6 (24.54) 52.8 (23) 60.5 (23.5) 43.7 (19.7) 56.9 (25) 53 (22) – 53.2 (21.7) 57 (25.3) – 53 (23.6) 75.6 (17) 55.2 (24) 58.4 (22.3) 44.1 (26.1)

– 2.55 3.14 3.37 3.47 2.75 3.23 2.87 3.41 2.87 3.23 – 3.2 2.9 – 3.1 2.46 2.98 3.06 3.71

Insured Not insured Own home Relatives’ home Sometimes at home, sometimes at relatives’ home – Men Women

Patient’s residence

Caregiver’s age Caregiver’s gender Caregiver’s education years Caregiver’s employment status

Employed Other: housekeeper, retired or unemployed Each patient’s number of caregivers – Barthel index – Caregiver’s SES status – Stage of disease (GDS) – 2 3 4 5 6 7

51.2 (25.5) 56.2 (23.3) – 50.1 (20.3) 57.2 (24.4) – – – – 47 (35) 29.2 (16.3) 43.8 (21.7) 54.6 (25) 57.8 (24.8) 67.9 (17.7)

3.2 2.98 3.43 2.89 – – – –

Type of Test

P Value


Regression >.001 153 ANOVA .0002 153

t test

Caregiver burden: the strongest predictor of self-rated health in caregivers of patients with dementia.

People having dementia need help and supervision to perform their activities of daily living. This responsibility is usually imposed on family members...
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