|Year : 2022 | Volume
| Issue : 1 | Page : 13-20
A study on socioeconomic correlates of family caregiver burden: Comparison between geriatric patients with dementia and with schizophrenia in a tertiary care center in Kolkata
Amrita Samanta, Santanu Ghosh
Department of Community Medicine, RG Kar Medical College and Hospital, Kolkata, West Bengal, India
|Date of Submission||17-Feb-2022|
|Date of Decision||08-Jun-2022|
|Date of Acceptance||12-Jun-2022|
|Date of Web Publication||03-Aug-2022|
Dr. Santanu Ghosh
Department of Community Medicine, College of Medicine and Sagore Dutta Hospital, 578, BT Road, Kolkata - 700 058, West Bengal
Source of Support: None, Conflict of Interest: None
Background: The role of being a caregiver of elderly patients with chronic psychiatric illnesses can be challenging. The objective of the current study was to determine and compare the family caregiver (FCG) burden of dementia and schizophrenic elderly patients and their associated sociodemographic factors. Materials and Methods: This descriptive cross-sectional study was conducted among 122 randomly-selected FCGs of geriatric patients with dementia (84) and schizophrenia (38) in the psychiatry outpatient department of RG Kar Medical College and Hospital, Kolkata. The original 22 items Zarit Burden Interview tool was used to assess caregiver burden. Data were analyzed in SPSS Version 20.0. The Mann–Whitney U-tests and Chi-square test were performed for bivariate analyses. Value of P < 0.05 was considered statistically significant. Results: Median age (inter quartile range) of dementia and schizophrenia patients were 74 (13) years and 67 (6) years, respectively. All FCGs studied were burdened with caregiving. FCGs of the schizophrenic group were more burdened than those of the dementia group (median score: 66 vs. 45, P = 0.000016). The female gender of patients and caregivers, years of institutional education, years of illness of the patient, and dependence on the caregiver for activities of daily living were positively associated with burden in both the groups. For FCGs of dementia patients, patients being widowed or separated (P = 0.00128), belonging to Islam by religion (P = 0.0083) and joint families (P = 0.00672), lower monthly family income (P = 0.00021), no current income of patient (P = 0.0001), higher monthly expenditure on patients (P = 0.0000), and the presence of chronic ailments requiring regular treatment (P = 0.00078) were found to be significantly associated with more burden. Conclusion: Field-based strategies addressing the caregiver burden of geriatric psychiatric patients must be developed and integrated into the existing health-care system.
Keywords: Caregiver burden, dementia, family, geriatric, schizophrenia
|How to cite this article:|
Samanta A, Ghosh S. A study on socioeconomic correlates of family caregiver burden: Comparison between geriatric patients with dementia and with schizophrenia in a tertiary care center in Kolkata. J Geriatr Ment Health 2022;9:13-20
|How to cite this URL:|
Samanta A, Ghosh S. A study on socioeconomic correlates of family caregiver burden: Comparison between geriatric patients with dementia and with schizophrenia in a tertiary care center in Kolkata. J Geriatr Ment Health [serial online] 2022 [cited 2022 Dec 2];9:13-20. Available from: https://www.jgmh.org/text.asp?2022/9/1/13/353169
| Introduction|| |
India is currently passing through a demographic transition resulting from a decline in fertility rate and an increase in life expectancy. This phase indicates that there will be a rapid increase in the number of the elderly and the health and social issues associated with them in the coming future, such as an increase in old-age dependency and the healthcare needs for the elderly.,
According to the Elderly in India 2021, the report from the National Statistical Office, the proportion of the elderly population among the total population has risen from 8.6% in 2011 to 10.1% in 2021 and has been projected to touch 13.1% in 2031. Along with the increasing proportion of the elderly, it has been reported by various Indian epidemiological studies that a variable degree of mental health morbidities in older adults is also on the rise.,, An epidemiological study from Uttar Pradesh, a northern Indian state, reported 43.3% of the elderly to be suffering from one or the other mental health problems as against 4.7% of adults.
Dementia is one of the most devastating mental health problems for the elderly. Worldwide, around 55 million people suffer from dementia, with over 60% living in low- and middle-income countries. As the proportion of elderly people in the population is increasing in nearly every country, this number is expected to rise to 78 million in 2030 and 139 million in 2050.As per the Dementia in India 2020 report, an estimated 5.3 million Indians aged >60 years had dementia in 2020, and this number is projected to exceed 14 million by 2050.,
Dementia affects patient's personal, social, and occupational life with significant impairment in their activities of daily living (ADL). As the disease progresses, patients with dementia become more and more dependent on their caregivers for ADL.
In the course of this caregiving continuum, key caregivers make lots of efforts and sacrifices which manifest as strain, stress, social isolation, and loneliness.,,
Schizophrenia is another severe mental illness estimated to affect 1 out of 100 people globally. It is a major contributor to the global burden of the disease accounting for about 1% of disability adjusted life years, 3% of years lived with disability, and is the eighth-leading cause of disability in people aged 15–44 years.
The impairments caused by schizophrenia limit the ability of the patients to remain independent in many domains of psychosocial functioning. Patients with schizophrenia, therefore, require long-term support and care which may prove burdensome to their caregivers.
Caregiver burden can be defined as the caregiver's perception of the physical, emotional, economic, and social cost of the caregiving relationship. Family members play a significant role in providing care and support for relatives who are suffering from mental illnesses. It has also been established that the quality of care given by family caregivers (FCGs) is significantly better. In India, the FCG is the main caregiver of the elderly or patients with mental illnesses.,
Caregiver burden has a negative impact on their physical, psychological, and social quality of life., It is higher in psychiatric ill patients compared to medically ill patients or patients with physical disabilities.,, Many factors are found to be associated with the caregiver burden of dementia-like not being a spouse, greater-than-average duration of caregiving, and dependency of individuals with dementia on ADL. It was also observed worldwide that FCGs of schizophrenic patients also suffer from immense caregiver burden.,
At present, India has two national programs, namely the National Programme for Health Care of the Elderly and the National Mental Health Programme addressing the health of the elderly and the mentally ill population, respectively, but none of the programs emphasizes the issue of caregiver burden.
Although there is a paucity of studies on the elderly with schizophrenia, it can be assumed that psychoses like schizophrenia in the elderly multiply burden on their caregivers. Many studies on the caregiver burden of dementia, schizophrenia, and elderly patients have been conducted in other parts of India. Nevertheless, the amount of research on this issue is meager in West Bengal and consequently, there exists a wide knowledge gap.
In this backdrop, the current study was contemplated to find out the caregiver burden of two major psychiatric illnesses in the elderly, dementia and schizophrenia, and compare the burden with the help of the Zarit Burden Interview Tool (ZBI) among the elderly patients attending dementia and psychiatry outpatient department (OPD) of a tertiary medical college, Kolkata.
| Materials and Methods|| |
This observational, descriptive study with cross-sectional design was conducted among 122 FCGs of geriatric patients with either dementia or schizophrenia for 6 months (July 2019–December 2019) at a Government tertiary care Hospital in Kolkata, West Bengal.
The protocol was approved by the Institutional Ethics Committee (Memo no: RKC/591, Dt. July 16, 2019). Written informed consent was obtained from all the participants before the interview. Privacy and anonymity of study participants were appropriately maintained.
Data were collected from 84 pairs of diagnosed geriatric dementia patients and their FCGs attending the dementia clinic and 38 pairs of diagnosed geriatric schizophrenic patients and their FCGs attending the general psychiatric OPD of the Hospital. The Dementia Clinic runs every Wednesday on an OPD basis. The general psychiatry OPD runs every Monday, Tuesday, Thursday, and Friday.
In the Indian study conducted by Srivastava et al., the overall ZBI score of caregiver burden of dementia patients was 31.53 ± 12.27 and from the Iranian study conducted by Rahmani et al., the score of the family burden of schizophrenic patients was 65.14 ± 9.17, in general, using ZBI. Using the formula Z2αSD2/L2, where, SD = standard deviation, L = absolute precision (considered 3%), Zα = 1.96, and considering 10% nonresponse, the final sample size comes to be 72 and 40 for dementia and schizophrenia patients, respectively.
From the dementia clinic and general psychiatric OPD, 90 patients with dementia and 45 patients with schizophrenia with their accompanied FCGs were randomly selected as per eligibility criteria. From this, 84 caregivers of geriatric dementia patients and 43 caregivers of elderly schizophrenic patients provided written informed consent to participate in the study. After the interview, it was found that all caregivers of dementia and 38 caregivers of Schizophrenia could understand and answer all the questions in the Zarit tool. Hence, the final sample size comprised 84 pairs of key caregivers and geriatric dementia patients and 38 pairs of caregivers and geriatric schizophrenic patients, respectively. The eligibility of study subjects was determined by following inclusion and exclusion criteria.
The pair of patient and FCG of which the patient was more than 60 years, diagnosed to have dementia or schizophrenia by the psychiatrist in the corresponding clinic and accompanied by at least one adult caregiver from his or her family who takes care of him or her in most of the time in the home for at least last 1 year were included in the study.
The caregivers of severely ill or agitated patients who needed emergency management and those who did not provide informed consent to participate in the study were excluded from the study. After getting written informed consent, data were collected by face-to-face interview of the selected study participants using a predesigned pretested semi-structured questionnaire containing questions for sociodemographic and other background information of the patients and their caregivers, the Zarit Burden Interview tool for measuring caregiver burden and Katz Index of Independence in ADL for assessing the functional status of geriatric patients. Considering the sociocultural setting, the self-administration of tools was avoided.
The questionnaire was translated into Bengali, the native language, and a back-translation exercise was performed with the help of two linguistic experts. The Bengali version was validated and pretested among 20 caregivers of psychiatric patients and modified accordingly. The validity and internal consistency (Cronbach's alpha = 0.84) of the questionnaire were found to be high.
ZBI is a 22-item self-administered questionnaire measuring subjective burden, which has high consistency and validity. It has good internal consistency and reliability, with a Cronbach's alpha coefficiency of 0.92.The questions refer to the caregiver/patient relationship and evaluate the caregiver's health condition, psychological well-being, finances, and social life.
The caregiver burden is evaluated by the total score obtained from the 22 questions and the caregiver distress is higher with higher scores. The items are rated on a four-point rating scale. Following is the scoring pattern of ZBI: Score-0–21 no burden; 22–40 mild–moderate; 41–60 moderate–severe; and 61–80 severe–profound burdens.
The Katz Index of Independence in ADL, commonly referred to as the Katz ADL, is an appropriate instrument to assess the functional status of a client in terms to perform ADL independently. The Index ranks adequacy of performance in the six functions of bathing, dressing, toileting, transferring, continence, and feeding. Clients scored yes/no for independence in each of the six functions. A score of 6 indicates full function, 4 indicates moderate impairment, and 2 or less indicates severe functional impairment. The tool is appropriate to be used in the geriatric population.
Data were coded and entered in the Statistical Package for the Social Sciences, Version 20.0 (SPSS, Chicago, IL, USA). Most of the variables were found to be nonnormal in distribution by normality plots and the Shapiro–Wilk test (P = 0.00002657). Hence, nonparametric tests were adopted for bivariate analyses. Qualitative data were expressed in proportions, while median and the inter quartile range (IQR) were calculated for quantitative data. Mann–Whitney U test, Spearman's correlation coefficient, and Chi-square test were conducted where appropriate. Statistical significance for all tests was set at P < 0.05.
| Results|| |
Out of a total of 122 pairs of patients and their FCGs, 84 (68.85%) belonged to the dementia and 38 (31.15%) belonged to the schizophrenia group. Among the total dementia patients (n = 84) 32 (38.09%), 36 (42.85%), and 16 (19.04%) were graded as mild, moderate, and severe patients of dementia, respectively, by psychiatrists in the psychiatry department of the hospital. Most of the mild dementia patients presented with symptoms of depression or mood change.
[Table 1] shows that the median age (IQR) of dementia and schizophrenic patients were 74 (13) and 67 (6), respectively. Median age of dementia patients (74 years) were found to be higher than schizophrenic patients (67 years) and these differences were statistically significant (P = 0.00024). Statistically significant higher proportion of schizophrenic patients were female (n = 26, 68.42%) married (n = 32, 84.21%) and belonged to joint family (n = 32.21%) in comparison to dementia patients (n = 28, 33.33%, n = 48, 57.14% and n = 36, 46.42%), respectively. Most of the patients and their caregivers were Hindu by religion (dementia: N = 60, 71.42%, schizophrenia-n = 21, 55.26%). Median years (IQR) of institutional education of dementia and schizophrenia patients were 6 (10) years and 4 (10) years, respectively. However, no statistically significant difference was observed regarding religion and median years of institutional education between the two groups. The proportion of independence in daily lives using Katz ADL scale was found to be more (P = 0.001687) among dementia patients (n = 64, 76.19%) compared to schizophrenic patients (n = 18, 47.36%). Average monthly expenditure was also found to be higher among dementia patients than schizophrenic patients (P =0.0444). Fifty-one (41.80%) of all patients in the present study had no current income and the rest had income either in the form of pension or bank returns.
The proportion of schizophrenic patients with no current earning (n = 22, 57.89%) was more than that the of dementia group (n = 29, 34.52%) and the difference was statistically significant (P = 0.01536).
[Table 2] shows that the median age (IQR) of FCGs of the dementia and the schizophrenic group were 36 (15.5) years and 34 (18.25) years, respectively, and the difference was not statistically significant. Significantly higher proportion of FCGs of dementia patients were male (P = 000302) (n = 56, 66.67%) and unmarried (P = 0.006763) (n = 36, 29.50%) compared to the FCG of schizophrenic group (n = 12, 31.27% and n = 6, 15.78%). Average years of institutional education of the caregivers were found to be similar (dementia – 12 years, schizophrenia – 10 years) in both the groups (P = 0.21493). Although a lesser proportion of FCG in the dementia group was reported to have chronic illness requiring regular treatment (n = 34, 40.47%) than the schizophrenic group (n = 19.50%), the difference was not statistically significant. The median monthly income of the family of dementia group (Rs. 20,000 ) were statistically higher (P = 0.01208) than that of schizophrenia group (Rs. 10750 ).
|Table 2: Sociodemographic profiles of key caregivers of dementia and schizophrenic patients (n=122)|
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Homemaking was the most common occupation among female caregivers (n = 26/122, 21.31%) and business (28/122, 22.95%) males. Private tutors (n = 14, 11.47%), drivers (n = 12, 9.84%), and school teachers (8, 6.55%) were other occupations among caregivers. Four (3.28%) were staffs of the study hospital (not in tables).
[Figure 1]a and [Figure 1]b illustrates that son was the most common caregiver in both the groups (dementia: n = 43, 51.90%; schizophrenia n = 12, 31.58%), followed by daughters-in-law in dementia group (n = 13, 15.47%) and daughters in schizophrenia group (n = 7, 18.42%).
[Table 3] depicts that as per the Zarit tool, all FCGS of both types of patients were burdened with caregiving. It was observed that more than two-fifth of FCGs (n = 52, 42.63%) had moderate-to-severe burden, nearly one-fourth (n = 30, 24.59%) of them had mild-to-moderate burden whereas 32.79% (n = 40) had severe-to-profound burden. The median burden score (IQR) was calculated as 48 (20.5), which lies in moderate-to-severe burden range. It was observed that FCC of schizophrenic patients underwent more burden compared to FCC of dementia patients (P = 0.000016). Caregiver burden was also found to be higher when manifestations of dementia are moderate-to-severe and severe grade compared to mild-to-moderate grade (P = 0.010472) (not in table).
It was observed that FCGs of schizophrenic group were more burdened than those of dementia groups (Median [IQR] score: 66 vs. 45 , P = 0.000016). Statistically significant higher proportion of FCGs (P = 0.000677) of schizophrenic group had severe burden score (n = 40, 63.15%) compared to their dementia counterparts (n = 16, 19.04%).
The result of the bi-variate analysis [Table 4] and [Table 5] shows that the female gender of patients and caregivers, fewer years of institutional education, more years on illness, and dependency in daily living on caregivers were associated with a higher burden in both groups. The FCGs of dementia patients, who were widowed or separated (P = 0.00128), belonging to Muslim community (P = 0.0083) and joint families (P = 0.00672) and had chronic ailments requiring regular treatment (P =0.00078) were found to have significantly more burden. Similarly dementia patients who have lower monthly family income (P = 0.00021), no current income at present (P = 0.0001), higher monthly expenditure for him or her (P = 0.0000) were found to pose more burden on their caregivers. Age of the patients, age of the caregivers, and marital status of caregivers were found to be unassociated with burden score in both the groups.
|Table 4: Association of caregiver burden with selected sociodemographic variables (categorical) and background of caregiver and patients (n=122)|
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|Table 5: Association of caregiver burden with selected sociodemographic variables (continuous) and background of caregivers and patients (n=122)|
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| Discussion|| |
The current study conducted among 122 elderly psychiatric patients and their FCGs showed that the caregiver burden was higher among schizophrenic patients than that of dementia patients. The severe-to-profound burden was more among the schizophrenic group. The more severe symptomology of schizophrenia and early onset of disease compared to dementia may explain the higher burden among the schizophrenic group.
Different studies showed that higher perceived social support is positively correlated with caregiver burden. The present study did not enquire about the social support of the caregiver, but it has revealed that higher monthly family income and higher educational level of caregivers were significantly associated with a lower burden on the caregivers of dementia patients.,
The study conducted by Schaffler-Schaden et al. in 2021 among FCGs of dementia patients reported a moderate level of overall burden as revealed by the current study. However, the abovementioned study used the short version of the Burden Scale for FCGs.
A hospital-based cross-sectional study in Iran by Abdollahpour et al. among caregivers of dementia patients in 2012 showed that the mean of caregiver burden using the Zarit tool was 55.2 which was close to the current study result. Similar to the present study, that study found gender (P < 0.01), education of the patient (P < 0.005 for illiterate patients), and the patient's dependence on the caregiver for his/her daily tasks (P < 0.000)) were correlated with a high level of burden on the caregiver.
A multicentric cross-sectional study in primary health-care centers was performed among 104 informal caregivers of dementia in Barcelona, Spain in 2021 by Rodrigo-Baños et al. where adjusted multivariate regression models showed that the caregivers' burden was affected by comorbidity, age, time of care, and dependency of the care receiver which corroborates with most of the findings of the present study. Nevertheless, the age of the patients and the caregivers were found to be unassociated with caregiver burden in the current study.
Srivastava et al. also found a moderate level of burden among caregivers of dementia patients using the Zarit burden tool in 2016 in India. Another Indian study conducted by Sinha et al. among caregivers of dementia patients in 2017 showed a moderate burden that was positively correlated with cognitive impairment and inability to carry out ADLs. Findings from both studies were similar to that of the current study. A systematic review using 22 similar studies on gender and gender differences in caregiving burden experienced by FCGs of persons with dementia in 2021 illustrated that majority of those studies reported a higher burden among females which was also found in the current study. The probable explanation behind the gender disparity may be the higher sociocultural expectation on females as caregivers and females being more emotional and empathetic compared to their male counterparts prone to experience greater burden.
Contrary to the current study findings, Shamsaei et al. reported a lower burden using ZBI among caregivers of schizophrenic patients in 2015 in Iran although patients did not exclusively belong to the elderly population in that study. However, similar to the present study, the level of burden experienced was significantly associated with gender, educational level, caregiving duration, and duration of schizophrenia. Yazici et al. in 2016 also showed a moderate burden using ZBI among caregivers of schizophrenic patients, unlike the current study which found a severe burden among them. However, this study revealed a negative correlation of burden with the income level of the family in comparison to the current study. Another cross-sectional study among 52 outpatients with schizophrenia and their spouses attending a tertiary psychiatric center in India in 2018 found that the duration of schizophrenia and socioeconomic status had a statistically significant association with spousal caregiver burden similar to the current study findings.
Studies on comparative analysis of caregiver burden between dementia patients and schizophrenic patients using the ZBI tool are scanty. A hospital-based cross-sectional study in Chandigarh, India in 2021 showed that caregivers of patients with schizophrenia reported a significantly higher level of burden on most of the domains compared to caregivers of dementia patients which corroborates current study findings. However, the later study used family burden interview schedule to assess caregiver burden and schizophrenic patients were not elderly.
Categorization of the severity of schizophrenic patients could not be done as the researchers had to depend on the diagnosis already given by the psychiatry department. It would have been better if the current study could assess the effect of the burden on caregivers and their coping strategies. A qualitative analysis of caregiver burden by conducting a mixed-method approach would have been more illuminating.
| Conclusion|| |
The present study concludes that schizophrenic elderly patients pose more burden to their FCGs compared to that of dementia patients. It has also shown that higher educational level, male gender, lesser duration of caregiving, higher monthly family income, and higher independence of patients are negatively associated with caregiver burden. Future research involving multiple study centers and a more diversified population adopting mixed-method approach is required to develop affordable, feasible, and effective intervention strategies to reduce the caregiver burden of psychiatric patients. The issue of caregiver burden must be addressed by the national programs through the primary health-care approach.
The authors would like to express their gratitude to Dr. Dilip Kumar Mondal, Prof. & Head, Dept. of Psychiatric Medicine, RG Kar Medical College, for granting permission to conduct the study and to all study participants for their cooperation during data collection.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]