|Year : 2021 | Volume
| Issue : 1 | Page : 15-19
A comparative study of caregiver burden and stigma among the caregivers of patients with dementia and schizophrenia
Shaheena Parveen, Aseem Mehra, Krishan Kumar, Sandeep Grover
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India
|Date of Submission||01-Mar-2021|
|Date of Decision||15-Mar-2021|
|Date of Acceptance||30-Apr-2021|
|Date of Web Publication||04-Aug-2021|
Dr. Aseem Mehra
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh
Source of Support: None, Conflict of Interest: None
Aim: This study aimed to assess the level of stigma faced by the caregivers of patients with dementia. The secondary objective was to evaluate the association of stigma faced by the caregivers with caregiver burden and compare the stigma and caregiver burden encountered by the caregivers of patients with dementia and schizophrenia. Methodology: This was a cross-sectional study, 50 patients with dementia and their caregivers and 50 patients with schizophrenia and their caregivers. Diagnosis of both the disorders was made as per the Diagnostic and Statistical Manual, Fifth Revision. The study participants were assessed on the Stigma Scale for caregivers of people with mental illness and family burden interview schedule. Results: Caregivers of patients with schizophrenia had been in the caregiver role for a longer duration and were not on paid employment. Caregivers of patients with dementia were more often children of the patients. Caregivers of patients with dementia reported a significantly lower level of stigma in all the domains as well as reported lower total stigma score. The significant difference persisted even after controlling for demographic and caregiving variables. Similarly, caregivers of patients with schizophrenia reported a significantly higher level of burden on all the domains, except for effect on the domain of mental health of others which persisted even after controlling for demographic and caregiving variables. Conclusion: Caregivers of patients with dementia experience a lower level of stigma and caregiver burden, compared to patients with schizophrenia even after controlling for different confounding variables.
Keywords: Burden, caregiver, dementia, schizophrenia, stigma
|How to cite this article:|
Parveen S, Mehra A, Kumar K, Grover S. A comparative study of caregiver burden and stigma among the caregivers of patients with dementia and schizophrenia. J Geriatr Ment Health 2021;8:15-9
|How to cite this URL:|
Parveen S, Mehra A, Kumar K, Grover S. A comparative study of caregiver burden and stigma among the caregivers of patients with dementia and schizophrenia. J Geriatr Ment Health [serial online] 2021 [cited 2021 Dec 9];8:15-9. Available from: https://www.jgmh.org/text.asp?2021/8/1/15/323102
| Introduction|| |
A caregiver is understood as the person who cares for a person with any illness and tries to fulfill the patient's needs to improve their psychological and physical well-being. Caregivers of patients with a severe and chronic illness such as dementia and schizophrenia face a significant burden as patients with these illnesses have high dependency needs as these disorders run a chronic course. [1,2] However, because of their association with patients, these patients' caregivers face significant burden, stigma, psychological morbidity, and poor quality of life.
The caregivers' stigma negatively impacts their quality of life, increases the caregiver burden, and leads to more psychological and emotional problems. [3,4] Stigma faced by the caregivers also delays help-seeking behaviors. [4,5]
Many studies from India have evaluated the stigma faced by the caregivers of patients with severe mental disorders, such as schizophrenia, and affective disorders.,, However, to date, no study has ever evaluated the stigma encountered by the caregivers of people with dementia. Data from the general population suggest that people usually perceive people with dementia as less dangerous, unpredictable compared to schizophrenia. [9,10] This study aimed to assess the level of stigma faced by the caregivers of patients with dementia in this background. Additional aims were to evaluate the association of stigma faced by the caregivers with caregiver burden and compare the stigma and caregiver burden encountered by the caregivers of patients with dementia and schizophrenia.
| Methodology|| |
This was a cross-sectional study conducted at the psychiatry outpatient service at a tertiary care hospital. The study included 2 groups of participants. Group-I comprised of 50 patients with dementia and their caregivers and Group-II comprised of 50 patients with schizophrenia and their caregivers. Diagnosis of both the disorders was made as per the Diagnostic and Statistical Manual, Fifth Revision. Patients with schizophrenia were required to be aged more than 18 years. Patients with comorbid substance dependence, other psychiatric disorders, and organic brain syndrome were excluded from the study. Patients with dementia were also required not to be suffering from any comorbid substance dependence, delirium, and any other psychiatric disorders. The institute's Ethics committee approved the study, in which it was carried out, and all the participants were recruited after obtaining written informed consent. Proxy consent for patients was obtained from the caregivers when the patient's themselves could not provide the written informed consent.
To be included in this study, the caregivers were required to be aged >18 years of age, themselves being free from any diagnosed psychiatric or chronic physical illness (other than nicotine dependence), and could read and/or understand Hindi. They were also required to be living with and intimately involved in the care of the patient.
Definition of caregiver for the index study
The caregivers were required to be a family member and living with the person with dementia or schizophrenia for most of the previous 1 year. Further, the caregiver was required to be involved in the care of a patient, living and supervising their medication, supervising the patient's daily living activity, and being actively involved in liaison with the treating team.
The caregivers were assessed on the following instruments:
Stigma scale for caregivers of people with mental illness
Stigma among the caregivers was assessed by Stigma scale for caregivers of people with mental illness (CPMI) which is a 22-item scale to evaluate caregivers' affiliate stigma. Each item is rated on a 4-point Likert scale from 1 = strongly disagree to 4 = strongly agree, with a higher score indicating a higher level of affiliate stigma. The 22 items are further organized into three domains assessing different components of affiliate stigma, that is, cognitive (7 items), affective (7 items), and behavioral components (8 items). The scale has excellent internal consistency with Cronbach's alpha of 0.95. The scale has been translated into Hindi and has been used in a previous study from India.
Family burden interview schedule
The Family Burden Interview (FBI), developed by Pai and Kapur, is a clinician-rated scale that has been commonly used to rate burden, particularly in Indian studies.,, Although the scale distinguishes between objective and subjective burden, the primary focus is on the objective burden. FBI comprises 24 items grouped under six areas of objective burden (financial burden, disruption of the routine of family activities, disruption of family leisure, disruption of family interaction, the effect on the physical health of others, and effect on the mental health of others) and one item evaluating the subjective burden. Furthermore, another open-ended question enquires about any burden that family perceives and is not covered by the items in the scale. Each item is rated on 0–2 scale. Higher scores indicate a higher level of caregiver burden. A score of more than or equal to 12 is an indicator of high burden. The reliability and validity of the scale are more than 0.87 and 0.72, respectively. Psychometric properties of the scale have been shown to be satisfactory. [17,18]
Statistical analysis was carried out using the Statistical Package for the Social Science, Version 14 (SPSS for Windows, Version 14.0. SPSS Inc., Chicago, IL, USA). Continuous variables were evaluated in the form of mean and standard deviation with range, and the ordinal and nominal variables were evaluated in the form of frequencies with percentages. Comparisons were made using unpaired Student's t-test and Chi-square test.
| Results|| |
As expected, the mean age of the patients with dementia was significantly higher than the patients with schizophrenia. When the patients with dementia and schizophrenia were compared, a significantly high proportion of the patients with dementia was married, from nonnuclear families, upper/upper-middle socioeconomic status and had higher family income [Table 1].
Compared to patients with dementia, the caregivers of patients with schizophrenia had a longer duration in the caregiver role and were not on paid employment. Compared to the caregivers of patients with schizophrenia, caregivers of patients with dementia were more often children [Table 2]. Caregivers of both the group did not differ on any of the other demographic variables [Table 2].
When the stigma as perceived by the caregivers of both the groups was compared, caregivers of patients with dementia reported a significantly lower level of stigma in all the domains as well as reported lower total stigma score [Table 3]. This significant difference between the 2 groups persisted even after controlling for demographic and caregiving variables [Table 3].
When the age of the patient, duration of illness, number of year of education of the patient, the income of patient, age of caregivers, duration of caregiving, and relationship of caregivers with the patient were taken as covariates as is evident from [Table 3], caregivers of patients with schizophrenia reported a significantly higher level of stigma on all the domains of CPMI.
In terms of caregiver burden, compared to caregivers of patients with dementia, caregivers of patients with schizophrenia reported a significantly higher level of burden on all the domains, except for effect on the domain of mental health of others [Table 4]. This significant difference persisted even after controlling for demographic and other caregiving variables [Table 4].
| Discussion|| |
The present study attempted to evaluate the level of stigma faced and the caregiver burden experienced by the caregivers of patients with dementia and compare the same, with the caregivers of patients with schizophrenia.
The profile of caregivers of patients with dementia and schizophrenia included in the present study is similar to that reported in earlier studies from India. [2, 8, 19, 20] Compared to the caregivers of patients with schizophrenia, caregivers of persons with dementia were in this role for a shorter duration and were more often on the paid employment. These differences between the 2 groups could be due to the differences in the age of onset of both the illnesses and relationship of the caregivers with the patient. Majority of the caregivers of persons with dementia were children and spouses, compared to the schizophrenia group, where a majority of the caregivers were parents. The existing literature supports the study group's caregiver profile from India. [2,6-8,19-21]
In the present study, compared to the caregivers of persons with schizophrenia, caregivers of persons with dementia reported significantly, lower stigma and caregiver burden. As there are a limited number of studies on stigma faced by the caregivers of persons with dementia, and the authors have used different scales to assess stigma, it is difficult to compare the present study findings with the existing literature. The present study's findings can be looked from the perspective of the hierarchy of stigma in different domains. In the present study, in the dementia group, the highest level of stigma was encountered in the affective domain, followed by a behavioral and cognitive domain. This hierarchy is similar to that seen in the schizophrenia group. This suggests that caregivers of persons with dementia do experience stigma in similar domains as that of caregivers of persons with schizophrenia but to a lower extent. This could be due to various reasons, such as the age of onset and the presence of abnormal behaviors. Schizophrenia affects persons at a very early age, especially during the productive years of life when a person is expected to go out of the house and work. If a young adult does not go out to work, it is often considered as odd, and hence, more often having a relative with schizophrenia comes to the knowledge of the neighbors and the society.
In contrast, dementia usually affects a person after they have passed through their productive years of life. Further, suppose the person with dementia does not exhibit, behavioral, and psychological symptoms. In that case, they do not come to limelight, as much as a person with schizophrenia comes to the known in the neighborhood. In addition, many people in society consider dementia to be part of aging. Due to this, when an elderly develop cognitive deficits, people consider it as an expected outcome. These factors possibly contribute to a lower level of stigma. Other factors that could contribute to a lower level of perceived stigma among the caregivers of dementia could be lower perceived level of dangerousness for patients with dementia than patients with schizophrenia, as reported in some of the available studies. [9,10]
The findings of the caregiver burden reported in the present study for patients with dementia,,,, and schizophrenia,, are supported by the previous studies from our center and other parts of the country, based on the same or different instrument used to assess caregiver burden. However, very few studies have directly compared the caregiver burden experienced by the caregivers of patients with dementia and schizophrenia. These studies also suggest that the caregiver burden is higher for patients with schizophrenia/psychotic illnesses when compared to dementia. As discussed above, higher caregiver burden among the caregivers of persons with psychotic illnesses could be due to illness's nature, and it affects the person in their peak productive years.
Limitation of the study
The present study has certain limitations, which can influence the generalizability of the results. These include cross-sectional study design, participants' recruitment by purposive sampling, the inclusion of outpatients only, and small sample size. The severity of the symptoms and the course of illness over the years were not taken into account. The other confounding factors such as the previous contact with the patients suffering from psychiatric illness, knowledge about the illness, coping skills, personality, psychoeducation, and available social support were not evaluated as part of this study. These variables can influence the reporting of stigma. Future studies must attempt to overcome these limitations.
| Conclusion|| |
The present study suggests that the caregivers of patients with dementia experience lower levels of stigma and caregiver burden than patients with schizophrenia. These significant differences persist even after controlling for different confounding variables. These findings suggest that the caregivers of patients with dementia are better placed than the caregivers of patients with schizophrenia.
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]