|Year : 2020 | Volume
| Issue : 4 | Page : 169-173
Caregiver burden and its correlates among people with Alzheimer's dementia: An exploratory study from Nepal
Ramesh Kandel1, Pawan Sharma2, Swarndeep Singh3
1 Division of Geriatric Medicine, Patan Academy of Health Sciences, Lagankhel, Lalitpur, Nepal
2 Department of Psychiatry, Patan Academy of Health Sciences, Lagankhel, Lalitpur, Nepal
3 Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, India
|Date of Submission||18-Nov-2020|
|Date of Decision||30-Nov-2020|
|Date of Acceptance||20-Dec-2020|
|Date of Web Publication||23-Feb-2021|
Dr. Ramesh Kandel
Division of Geriatric Medicine, Patan Academy of Health Sciences, Lagankhel, Lalitpur
Source of Support: None, Conflict of Interest: None
Background: Alzheimer's dementia has a spectrum of health and socioeconomic implications for patients and caregivers. The study is intended to assess the burden of caregivers and explore some of the possible influencing factors. Materials and Methods: A cross-sectional design and purposive sampling were conducted with the semi-structured questionnaire to the caregivers of patients with Alzheimer dementia attending the dementia clinic between January 2019 and June 2019. Results: About 94.2% of the caregivers included in the present study reported a Zarit burden score of 17 and above, indicative of high caregiver burden. There was no significant correlation between the age of patient and caregiver burden (r = −0.18, P = 0.8). In bivariate analysis, the number of comorbid medical illnesses (ρ = 0.37, P < 0.01), number of medication doses taken per day (ρ = 0.42, P < 0.01), Katz activities of daily living (ADL) score (ρ = −0.56, P < 0.01), and additional care burden calculated by counting the number of other care services such as diaper care and bedsore care provided to the patient daily (ρ = 0.48, P < 0.01) were significantly correlated with caregiver burden. In multiple linear regression analysis, the Katz ADL score of patients with dementia (β = −0.38, P = 0.002) was the single most significant correlate of Zarit burden score, representing caregiver burden. Conclusion: There is a high level of burden among caregivers for people with dementia in the Nepalese population. The single most important independent factor affecting caregiver burden was Katz ADL score. This study's outcomes support the idea of the development of long-term care systems for families with high caregiver burden.
Keywords: Activities of daily living, Alzheimer's dementia, caregiver burden
|How to cite this article:|
Kandel R, Sharma P, Singh S. Caregiver burden and its correlates among people with Alzheimer's dementia: An exploratory study from Nepal. J Indian Acad Geriatr 2020;16:169-73
|How to cite this URL:|
Kandel R, Sharma P, Singh S. Caregiver burden and its correlates among people with Alzheimer's dementia: An exploratory study from Nepal. J Indian Acad Geriatr [serial online] 2020 [cited 2021 Apr 20];16:169-73. Available from: http://www.jiag.com/text.asp?2020/16/4/169/310002
| Introduction|| |
Alzheimer's dementia (AD) is the leading cause of dementia worldwide and is one of the prime reasons of disability and dependency among older people. AD management's current goal has been to improve and support the quality of life of patients, their families, and caregivers. There is a spectrum of physical, psychological, and socioeconomic implications for the people living with AD and their caregivers, families, and society at large. The AD is a progressive neurodegenerative illness with no curative treatment options available to date, and the care needs of the patients change over time. It demands enormous support from caregivers as it advances through different stages. Owing to hospitalizations, treatments, home care expenses, and the loss of economic contribution, the annual worldwide societal cost of dementia is estimated to be approximately 818 billion American Dollars equivalent to 1.1% of global gross domestic product. Each stage of AD imposes different responsibilities on caregivers, increasing their burden. Providing care to a chronically ill patient is a long-term, wearing, and severe process depending on the clinical stages.
The majority of AD burden is among the geriatric age group. As age advances, the medical morbidities accumulate in the elderly, and the number of medicines they take increases proportionately. Similarly, because of degenerating anatomy and physiological functions of multiple bodily systems including the cognition, the geriatric population tends to be frailer, and dependent on their families or caregivers for performing their necessary, instrumental, and advanced activities of daily living (ADL). Due to the deteriorating cognitive functions, the dependency of the elderly upon their caregivers is increased disproportionately. Nearly 80% of older adults with dementia require help with daily personal care activity such as bathing, dressing, grooming, or eating. In contrast, only 20% of older adults without dementia need help with these basic ADL.
Worldwide, nearly 60% of caregivers for people with Alzheimer's and other dementias rated caregiving's emotional stress as either high or very high, with about 40% of them reportedly suffering from depression. In developing countries like Nepal, the long-term institutional health-care system for chronic degenerative illnesses such as AD, social security, and support for older people and the universal free health coverage are quite in its infancy stage of development. In Nepal, the out-of-pocket payment is the primary mode of accessing health-care services by a significant population. All these dimensions of inadequate health systems and services add to the brunt of the negative impact on the family members, especially with AD, leading to chronic caregiver stresses and burden. There is a shortage of literature for the different correlates of caregiver burden in Nepalese context.
Our study is intended to assess the burden of caregivers involved in caring for their beloved family member with AD and explore some of the possible factors influencing this burden.
| Materials and Methods|| |
Study settings and participants
The data were collected from caregivers of the patient accompanying the patients attending the dementia clinic of a tertiary care hospital in Lalitpur, Nepal, between January 2019 and June 2019. Cross-sectional design and purposive sampling method were used. Those caregivers are willing to participate and provide written informed consent were enrolled in the study.
Basic pro forma
A semi-structured questionnaire to assess the basic sociodemographic profile (namely, age and gender) of the patients, comorbid medical illnesses, number of medications, additional care required, and information about the caregiver was used.
The Katz activities of daily living scale
It is a widely used graded instrument that assesses six primary and psychosocial functions: bathing, dressing, toilet, transferring, feeding, and continence. Individuals are scored yes/no for independence in each of the six functions. A score of six is a measure of full function, four reflects moderate impairment, and two or less indicates severe functional impairment. It is a short but reliable and valid measure of ADL.
Zarit burden interview
The revised version of the original scale contains 22 items. Each question on the interview is a statement which the caregiver is asked to endorse using a 5-point Likert scale (0: never to 4: nearly always). The sum of scores ranges between 0 and 88, with higher scores indicating a more significant burden. A score of 17 or more is usually considered a high burden. It is a valid and reliable instrument for measuring the burden of caregivers for patients with dementia.
Informed consent was taken. Participation in this study was completely voluntary. Participants were made aware that if they decided to stop participating, they could do it at any time. This was an anonymous study, and confidentiality of the data obtained was maintained. No incentive was provided for completing the survey. There were no foreseeable risks involved. No one could identify participants and their answers, and no one would know whether or not they participated in the study.
The data were analyzed using SPSS version 23.0 (Armonk, NY, IBM Corp., USA). Descriptive statistics using mean, standard deviation (SD), frequency, and percentage were used to describe the basic demographic profile, clinical characteristics, independence in performing basic daily living activities (measured using the Katz ADL scale), and additional care burden needed for the study sample comprising patients with dementia. In addition, the median and inter-quartile range were described for skewed data. Further, information regarding the primary caregiver status and the caregiver burden was measured using the Zarit burden scale score. The data were checked for normal distribution using Q-Q plots, and nonparametric tests (Spearman correlation) were used for variables with skewed distribution. Bivariate analysis using appropriate inferential statistics (Pearson correlation, and independent t-test) were conducted to examine the associations between different variables and the Zarit burden scale score. Multiple linear regression analysis was performed with variables having a significant bivariate relationship to determine the Zarit burden scale score's correlations. The level of statistical significance was set at P < 0.05 for all the tests. There was no missing value imputation done.
| Results|| |
The males slightly outnumbered the females in the study sample, with 43 out of 85 participants belonging to male gender (n = 43, 50.6%). The study sample's average age was 75.38 years (range: 45–95; SD: 10.05]. The detailed demographic and clinical profile of the study sample is given in [Table 1].
|Table 1: Demographic and clinical profile of patients with dementia (n=85)|
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The mean Zarit burden scale score representing the caregiver burden was 40.68 (SD: 18.94). About 94.2% of the present study caregivers reported Zarit burden score of 17 and above, indicative of high caregiver burden in them. There was no significant correlation between the age of patient and caregiver burden (r = −0.18, P = 0.8). The number of comorbid medical illnesses (ρ = 0.37, P < 0.01), number of medication doses taken per day (ρ = 0.42, P < 0.01), Katz ADL score (ρ = −0.56, P < 0.01), and additional care burden calculated by counting the number of additional care services such as diaper care and bedsore care provided to the patient daily (ρ = 0.48, P < 0.01) were significantly correlated with caregiver burden. There was no significant difference in the caregiver burden based on the gender patients (t = 1.57, P = 0.11) or primary caregiver status (t = 1.59, P = 0.11).
Multiple linear regression analysis was conducted with all the variables showing the significant relationship with caregiver burden in the above-described bivariate analysis entered as independent variables, and the Zarit burden score as the dependent variable. The model [Table 2] was statistically significant (F = 10.59; P < 0.01) and explained 34.6% of the variance in Zarit burden score. The Katz ADL score of patients with dementia (β = −0.38, P = 0.002) was the single most significant correlate of Zarit burden score, representing caregiver burden.
|Table 2: Multiple linear regression equation for correlates of Zarit burden score representing caregiver burden among study participants (n=85)|
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| Discussion|| |
This study is the first of its kind to our knowledge to reveal the association between the geriatric variables and the caregiver burden for patients with AD in Nepal. With the rise in the number of patients with AD, it has become a significant public health issue with a spectrum of socioeconomic implications. AD can be overwhelming for the families of affected people and their carers. Physical, emotional, and financial pressures can cause significant stress to families and carers, and support is required from the health, social, economic, and legal systems.
Based on our study, factors such as multimorbidity (two or more concurrent morbidities in an individual), the higher number of prescribed drugs and functional status measured by ADL were significantly associated with the caregiver burden. In contrast, factors such as age, the gender of the care recipients, and the caregiver (primary or secondary) had no significant association with the burden.
In a community-based survey conducted in Japan, Goren et al. compared the family caregivers for patients with dementia and the noncaregivers in characteristics and health outcomes such as comorbidities and health-related quality of life (HRQoL), productivity, and resource use. It was observed that the caregivers for the patient with dementia experienced significantly lower HRQoL and more significant productivity impairment compared to the noncaregivers. Older age, multimorbidity, and dementia were all strongly correlated with adverse health outcomes and a proxy for loss of independent living. Multimorbidity complicates the clinical picture of the AD and may accentuate the expression of symptoms of the patients with AD. Multimorbidity is observed to predict caregiver dependence. More is the number of morbidities in an individual; more is the stress on an available finite number of resources for their management. With multimorbidity affecting various organ systems, the older individual gets frailer, and this also increases the dependency of the individual on his/her caregivers for daily living activities. This might have contributed to the increase in the burden of caregivers in our study as well.
The number of drugs taken by an individual rises proportionately with the number of concurrent morbidities in an individual. As multimorbidity increases caregiver burden, an increase in the number of drugs is indirectly associated with caregiver burden. Similarly, the cost of procuring a large number of drugs based on out-of-pocket payments adds to the financial stress of caregiving.
The staging of severity in AD depends on the functional status and the behavioral and psychosocial symptoms of dementia (BPSD). Thus, patients become more dependent on their caregivers for ADL and require additional management of BPSD as the disease advances. A person may function independently in the early mild stage of AD. However, as the disease progresses to moderate stage, the person with AD will require a greater level of care and support from others. In severe stage, as memory and cognitive skills continue to worsen, the individuals need extensive care.
Functional status predicts the individual's independence and thus determines the magnitude and level of care required by an individual irrespective of the type of illness. Katz ADL assesses the independence in necessary ADL such as bathing, toilet control, grooming, transfer, and feeding. At any given age, people with worse functional status have higher annual mortality. Functional status is a more robust predictor of acute care readmissions in neurological illnesses such as a stroke than medical comorbidities. An ADL assessment helps to determine if a patient requires rehabilitation or support at home or a skilled nursing or long-term care facility would be needed for better care.
Razani et al. assessed caregiver burden and psychological distress in 34 patient caregiver dyads. The patients had mild dementia and found that cognitively impaired patients' ADL abilities were significantly correlated with caregiver burden. Care of an AD patient gets more complicated when the patient becomes progressively dependent on caregivers owing to cognitive deterioration and frailty. With the illness's progression, the patients require caregiver support for personal hygiene, grooming, bladder and bowel care, and transfer and feeding. Additional morbidity apart from AD proportionately increases the amount of care and level of care required by the patient. The concurrence of comorbidities, old-age related frailty, and cognitive dysfunction leads to loss of ability even for minimal self-care, leading to increased service demand from the caregivers.
The present study showed that an alarmingly large proportion of caregivers for AD patients were experiencing a high degree of caregiver burden. The family members, especially the son or daughter-in-law, contribute as primary unpaid caregivers in Nepal. As long-term institutional care is poorly developed and funded in Nepal, the caregivers are not paid. Informal primary caregiver lacks professional knowledge and has limited training in caregiving to perform the activities that meet people with dementia. They will likely experience a more significant care-induced burden. The limited skills, time, and financial constraints coupled with expensive existing formal care system add to the physical, psychosocial, and socioeconomic stresses of caregiving. This might explain the high caregiver burden reported by about 95% of caregivers enrolled in our study.
There are some strengths to our study. This is one of the few published studies looking at the caregiver burden among the carers of dementia patients. However, there are few limitations to it as well. The relatively small sample size recruited using a nonrandomized sampling procedure, limits the generalizability of the present study findings. Furthermore, we did not look at the various caregiver-related factors affecting the burden as done in many other studies., Hence, we recommend studies with a larger sample size and looking for other caregiver factors to see this population's burden.
| Conclusion|| |
There is a high level of burden among caregivers for people with dementia in the Nepalese population. The single most important independent factor affecting caregiver burden was Katz ADL score, suggesting that caregiver burden increases with decreased independence for performing necessary daily living activities among people with dementia. However, we recommend further studies with larger sample size and a more robust methodology to confirm and better characterize the present study's findings.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]