|Year : 2018 | Volume
| Issue : 1 | Page : 30-34
Disability and caregiver burden: Relation to elder abuse
Sreelakshmi Vaidyanathan, Enagandula Rupesh, Alka A Subramanyam, Surbhi Trivedi, Charles Pinto, Ravindra Kamath
Department of Psychiatry, TNMC and BYL Nair Ch. Hospital, Mumbai, Maharashtra, India
|Date of Web Publication||27-Jun-2018|
Department of Psychiatry, TNMC and BYL Nair Ch. Hospital, OPD 13, 1st Floor, OPD Building, Mumbai Central, Mumbai - 400 008, Maharashtra
Source of Support: None, Conflict of Interest: None
Aims: The aim of this study is to assess the prevalence and severity of elder abuse, its relation to elder disability and caregiver burden and to ascertain the better predictor between them for abuse. Materials and Methods: A total of 100 patients ≥60 years with their caregivers (50 from medical geriatric outpatient department [OPD] and 50 from psychogeriatric OPD) were recruited from a tertiary care center after screening for cognitive issues significant enough to hamper the responses using Elderly Cognition Assessment Questionnaire (score <5 excluded). Semi-structured pro forma and scales were applied (Elder abuse screening instrument for abuse, World Health Organization Disability Assessment Schedule 2.0 to assess functioning and disability, and Zarit's Burden Interview for caregiver burden). Results: Mean scores of abuse, disability, and degree of burden were 3.58, 24.21, and 14.87, respectively. Significantly greater abuse was found in disability domains of cognition and getting along with people in the psychiatric population than the medical population of the study. Furthermore, significant correlation was found individually of disability and degree of burden with the abuse score (P = 0.005 and 0.000, respectively), and degree of burden (r2 = 26) is a better predictor of abuse in comparison to disability (r2 = 8). Conclusion: Elder abuse appears to be directly correlated with disability (psychological > physical) and caregiver burden. To reduce abuse, we need targeted therapy aimed at easing caregiver burden in addition to measures to reduce and aid for elder disability.
Keywords: Caregiver burden, disability, elder abuse
|How to cite this article:|
Vaidyanathan S, Rupesh E, Subramanyam AA, Trivedi S, Pinto C, Kamath R. Disability and caregiver burden: Relation to elder abuse. J Geriatr Ment Health 2018;5:30-4
|How to cite this URL:|
Vaidyanathan S, Rupesh E, Subramanyam AA, Trivedi S, Pinto C, Kamath R. Disability and caregiver burden: Relation to elder abuse. J Geriatr Ment Health [serial online] 2018 [cited 2019 Aug 22];5:30-4. Available from: http://www.jgmh.org/text.asp?2018/5/1/30/235373
| Introduction|| |
Changing demographic trends due to increased life expectancy has led to an expansion in the elderly population with a decline in the proportions of the young and working-age population. This leaves fewer available caregivers and is making caregiving an increasingly challenging task for family members. Often as a result of this, neglect and abuse of the elderly may be seen. It is emerging as a worldwide health issue of importance.
World Health Organization (WHO) defines elder abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”., Abuse includes physical, psychological, and sexual abuse, neglect, and financial exploitation.
A systematic review by Cooper et al. found that one in four vulnerable elders is at risk of abuse. In a review by Dong, 1-year prevalence in India was 14%, which was among the lowest in Asia., However, in India, with the dwindling joint families, urbanism, reduced workforce at home for caregiving due to increased number of women also working, studies are finding a trend of moving away from the traditional role of caring for one's parents, and over the years, many elderly individuals feel mistreated., Elder abuse has been shown to have grave health consequences including physical and psychological problems and significant morbidity and mortality.,,
Several risk factors have been linked with elder abuse. The risk factor most consistently found to be associated with elder abuse is cognitive impairment. With regard to other factors, especially sociodemographic and socioeconomic factors, studies have been inconsistent, though some have found abuse to be associated with increasing age, functional impairment, and lack of social support., Impairment in physical functions of elderly places additional demands on the caregiver and causes substantial morbidity., However, our current understanding of the relationship between physical functions and elderly abuse is incomplete.
Studies have found that being the caregiver of an elderly person is by itself a risk for elder abuse. Most previous research has predominantly been on caregivers of elders with dementia. Studies have shown that anxious and depressed caregivers more often engaged in abuse and that spending more time and a higher caregiver burden are also associated with abuse.,,
Thus, there are lacunae in research on elder abuse in India, and a better understanding of important risk factors is a must to grasp the problem of elder abuse and develop effective means of prevention.,,
In this study, we have screened and excluded those with significant cognitive impairment and assessed elder abuse in two groups, one with only medical comorbidity and the other with psychiatric diagnosis, with or without medical comorbidity, and its correlation to caregiver burden and disability in elderly patients seeking treatment on outpatient department (OPD) basis at a tertiary care center. We have further gone to assess for the parameter which is a better predictor of elder abuse between caregiver burden – a perpetrator factor and disability – a patient factor.
| Materials and Methods|| |
The study was conducted after obtaining approval from the Institutional Ethics Committee. Written informed consents were taken from both the patient and caregiver.
It was a cross-sectional observational study in elderly patients seeking treatment on OPD basis at a tertiary care center. A total of 100 elderly participants (age ≥60 years), who had a primary caregiver present, were recruited consecutively, as a sample of convenience. Fifty were from people attending medical geriatric OPD (n1- patients having only medical comorbidity), in whom psychiatric comorbidity was ruled out on clinical interview with patient and primary caregiver (using Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition Text Revision). The rest 50 were from those attending psychogeriatric OPD (n2- patients having psychiatric comorbidity with or without medical comorbidity). All patients were screened for cognitive dysfunction using Elderly Cognitive Assessment Questionnaire, and if the score was <5 out of 10, indicative of probable dysfunction, they were excluded. Those with aphasia, any acute psychotic illnesses, or active psychopathology which could interfere with the interview were excluded by clinical evaluation.
The interview was conducted by a single interviewer, to eliminate collection bias.
Semi – structured pro forma
Basic demographic factors, illness variables, and psychosocial variables were collected using semi-structured pro forma.
Elder Abuse Screening Instrument developed by Fulmer et al. (2004) – modified
It is a qualitative scale that comprises of two main aspects – 12 items concerned with elder safety and 8 items concerned with elder access of health services. For the purpose of comparison and quantification, the responses were scored from 0 to 3 with 0 – never, 1 – rarely, 2 – frequently, and 3 – always, as per the statistician's advice with 0 being the minimum score and 60 the maximum. This scale was chosen for the assessment of elder abuse as no Indian scales were available, and the questions of this scale seemed culturally most appropriate to the research team.
The World Health Organization Disability Assessment Schedule 2.0
This scale (Hindi translation as available with WHO) was used to assess the level of functioning. It is a standardized scale used world over and captures the individual's level of functioning in the six major domains: (1) cognition (understanding, communication), (2) mobility (ability to move and get around), (3) self-care (personal hygiene, dressing, eating, living alone), (4) getting along (ability to interact with people), (5) life activities (ability to carry out responsibilities at home, work, school), and (6) participation in society (ability to engage in the community, civil, recreation activities). The scale has a high internal consistency (Cronbach's α =0.86) and a stable factor structure across all countries. The scoring will be done by item response theory (IRT)-based scoring which will convert the summary score into a metric ranging from 0 to 100 (where 0 = no disability; 100 = full disability).
Zarit Burden Interview
It is a 22-item self-report inventory which is standardized and used world over to measure subjective burden associated with functional/behavioral impairments and the home care situation quantitatively among the caregivers using a 5-point Likert scale response ranging from never to nearly always present. Total score is obtained by adding the numbered responses from individual items and ranges from 0 (low burden) to 88 (high burden). Scale has good construct validity and excellent internal consistency (Cronbach's alpha = 0.83 and 0.89). A test-retest reliability of 0.71 was obtained. Estimates of the degree of burden can be divided into four categories: 0–20 (little or no burden), 21–40 (mild to moderate burden), 41–60 (moderate to severe burden), and 61–88 (severe burden).
The data were organized and analyzed using SPSS v. 19 (IBM Corp. Released 2010). Descriptive statistics were used to analyze demographic variables. Pearson's correlations, t-test, and one-way ANOVA were used to assess the relation between various parameters and the groups.
| Results|| |
The average age of overall study population was 67.24 years, and 57% were female. Most of the patients were from joint and nuclear families and belonged to Class IV and V of B.G. Prasad's socioeconomic class. Both the groups in the study were comparable in terms of the demographic factors. In the study population seeking medical treatment, the most common diagnosis was hypertension (68%) followed by diabetes mellitus (34%). Nearly, 18% of this group had comorbid hypertension as well as diabetes. In the population seeking psychiatric help, the most common diagnosis was depression (40%), followed by psychosis (36%). About 34% of patients in this group had a comorbid medical diagnosis as well.
Elder abuse scale scores showed that in the study population, 11.6% rarely, 3.6% frequently, and 0.8% always worried about their safety, while 84% had no issues with safety. 9% rarely and 2% frequently were deprived of access to health services, while 89% had no problem to access. The mean total Elder Abuse Screening Instrument (EASI) score was 3.58 (standard deviation [SD] = 5.55), with mean scores in the subdomains being: elder safety –2.54 (SD = 3.7) and elders access to health services –1.04 (SD = 2.16).
The mean score for global disability on WHO Disability Assessment Schedule 2.0 (WHODAS-2) was 24.21 (SD = 16.144) which corresponds to around the 85th percentile as per the population norms as given by the WHO.
The mean scores in the subdomains were as follows: cognition = 20.70, mobility = 26.69, self-care = 10.40, getting along = 22.56, life activities (household) =30.90, and participation in society = 26.96.
Assessing for primary caregiver burden on the Zarit Burden Interview (ZBI) gave a mean score of 14.87, with the maximum score being 71. Nearly, 77% of caregivers experienced little or no burden, 14% mild to moderate burden, 7% moderate to severe burden, and 2% severe burden.
Comparison between the groups, i.e., n1- patients having only medical comorbidity and n2- patients having psychiatric comorbidity with or without medical comorbidity for the three above-mentioned parameters gave the following results [Table 1]:
|Table 1: Comparison of parameters of abuse (Elder Abuse Screening Instrument score), disability (World Health Organization Disability Assessment Schedule score), and caregiver burden (Zarit Burden Interview score) between the two groups of study population (n=100)|
Click here to view
- The mean EASI score of psychiatric group, i.e., elderly population seeking psychiatric care is significantly more than medical group, i.e., elderly population seeking medical care, and this difference is statistically significant (F = 8.741, P = 0.006). Thus, abuse in our sample was significantly greater in elderly individuals seeking psychiatric care as compared to elderly individuals with only medical illness
- Cognitive disability (understanding, communication) (P = 0.000) and disability in terms of getting along (ability to interact with people) (P = 0.011) were significantly greater in elderly individuals seeking psychiatric care as compared to elderly individuals with medical illness only
- No significant difference was found in the degree of burden perceived by the primary caregiver of the elderly on ZBI among the medical (elderly population seeking medical care) and psychiatric (elderly population seeking psychiatric care) groups (P = 0.094).
On obtaining the baseline scores, we further analyzed the data for correlating factors, as picked up from the above. We found no significant correlation of elder abuse with the demographic parameters.
There was a significant positive correlation of elder abuse with the disability (on the WHODAS-2 scale) of the elderly (r = 0.279, P = 0.005). Furthermore, 8% of abuse is explained by the disability of the elderly (determination coefficient, r2 = 8) [Table 2]. If we look at the correlation of abuse with the domains of disability, there is significant positive correlation of EASI score with domains of cognition, i.e., understanding and communication (r = 0.328, P = 0.001), getting along, i.e., ability to interact with people (r = 0.210, P = 0.036), and participation in society, i.e., ability to engage in the community, civil, and recreation activities (r = 0.291, P = 0.003). Thus, it can be concluded that the elder abuse is greater with greater disability in cognition, disability of getting along, and disability of participation in society.
|Table 2: Correlation of Elder Abuse Screening Instrument score with disability (n=100)|
Click here to view
We found significant positive correlation of elder abuse with the primary caregiver burden (r = 0.504, P = 0.000). Twenty-six percent of abuse is explained by degree of burden on the primary caregiver (determination coefficient, r2 = 26) [Table 3]. Furthermore, there was significant positive correlation of item-wise score of EASI to degree of burden. With increase in degree of burden perceived by the primary caregiver, there is a significant increase in both the items of elder abuse, i.e., safety (r = 0.525, P = 0.000) and access to health services (r = 0.393, P = 0.000).
|Table 3: Correlation of Elder Abuse Screening Instrument score with degree of burden on Zarit Burden Interview (n=100)|
Click here to view
From [Table 2] and [Table 3], for correlation with elder abuse, the determination coefficient of primary caregiver burden (26) is greater than the determination coefficient of disability of elderly (8). Thus, elder abuse is more explained by primary caregiver burden (caregiver factor) than disability of elderly (patient factor), making caregiver burden a better predictor of elder abuse.
| Discussion|| |
Studies have found rates of elder abuse to be up to 5%, and 1-year prevalence in India was 14%.,, In our study, 11.6% elders were rarely, 3.6% were frequently, and 0.8% were always concerned about their safety, while 84% were not concerned. 9% elders were rarely and 2% were frequently deprived of access to health services, while 89% were not.
We found no significant correlation of elder abuse with demographic parameters such as age, gender, socioeconomic class (income), and type of family (living arrangement and informal social support), though previous studies for sociodemographic and socioeconomic factors have been inconsistent.
A significant positive correlation was established between abuse and disability (P = 0.005, determination coefficient = 8) and abuse and primary caregiver burden (P = 0.000, determination coefficient = 26), which is in accordance with the literature from previous studies.,,,, Looking further into the domains, we found elder abuse to be significantly greater with greater disability in cognition (understanding and communication) (P = 0.001), getting along (ability to interact with people) (P = 0.036), and participation in society (ability to engage in the community, civil, and recreation activities) (P = 0.003). Furthermore, the increase in degree of burden was significantly related to increase in safety issues and deprivation of access to health services.
This association between elder abuse and caregiver burden can be best explained by the Caregiver Stress Theory  [Figure 1]. Anetzberger proposed an alternative holistic model for elder abuse which explains the complete association of elder abuse with caregiver burden and disability. It theorizes that elder abuse is primarily a function of the perpetrator's characteristics and secondarily a function of victim's characteristics, i.e., both factors interact giving rise to the dynamics related to caregiving. Perpetrator's characteristics include caregiving stress and personality, while victim's characteristics include disability and illness, etc.
|Figure 1: A Model of Caregiver Stress Theory Approach to Elder Abuse (Adapted)|
Click here to view
Comparison among the subgroups showed the abuse to be significantly greater in elderly population seeking psychiatric care as compared to elderly population seeking medical care (P = 0.006) which is in accordance with other studies. The caregiver burden however did not seem to vary across physical or psychiatric illnesses, both causing equal burden.
Hence, we can see a distinct correlation of elder abuse with caregiver burden and disability. Elder abuse is affected both in terms of safety and health due to disability and caregiver burden, the latter being a better predictor for abuse.
| Conclusion|| |
In our study population, 84% of the elderly were not concerned about their safety and 89% were not deprived of access to health services. However, 11.6% were rarely, 3.6% were frequently, and 0.8% were always concerned about their safety, and 9% were rarely and 2% were frequently deprived of access to health services. The mean global disability was 24.21 (85th population percentile) and mean caregiver burden was 14.87.
A significant correlation was established between abuse and disability (P = 0.005, determination coefficient = 8) and abuse and primary caregiver burden (P = 0.000 and determination coefficient = 26). Elder abuse was greater with greater disability in cognition, getting along, and participation in society. Cognitive disability and disability in getting along were significantly greater in the elderly seeking psychiatric care than those seeking medical care. Caregiver burden in both physical and psychiatric illnesses is an important predictor for elder abuse as compared to disability.
Thus, disability and caregiver burden are factors associated with elder abuse, and this vicious cycle needs to be intercepted keeping both these parameters in mind.
It has been assumed that elder abuse correlates with disease duration and severity and that the elder is the victim and caregiver the perpetrator. In this study, however, we have clearly shown that apart from the elder disability, assessment of caregiver burden is equally important as an independent predictor of elder abuse.
Assessment of caregiver burden and strategies aimed at reducing this, for example, daycare services, home-based volunteers to give free time to caregivers, and family scheduling, is of utmost importance and needs to be undertaken in addition to disability reduction of the elderly and improving their access to healthcare services. This would help reduce elder abuse in which both the victim as well as the perpetrator are actually victims of the illness burden.
Our study findings have to be viewed in light of a few limitations, namely, small sample, sampling bias was present (hospital population), and details of the abuse were not explored.
Further research, with a prospective, longitudinal study design, might help ascertain the above factors and the extent of contribution of each, as well as the extent of the abuse itself.
Dr. D. S. Asgaonkar Prof. and HOD and Dr. M. V. Kaneria, Associate Prof. (in charge of Medicine Geriatric OPD), Department of Medicine, TNMC and BYL Nair Ch. Hospital, Mumbai - for having granted the permission to recruit patients from their OPD.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Report of the Commission for Social Development Acting as the Preparatory Committee for the Second World Assembly on Ageing, 2nd
Session, New York, 25 February – 1 March 2002. Abuse of Older Persons: Recognizing and Responding to Abuse of Older Persons in a Global Context: Report of the Secretary – General – [New York]: UN, 9 January, 2002. p. 11. Issued Under Agenda item 3 of Agenda E/CN.5/2002/PC/1; 2002.
Dong XQ. Elder abuse: Systematic review and implications for practice. J Am Geriatr Soc 2015;63:1214-38.
Cooper C, Selwood A, Livingston G. The prevalence of elder abuse and neglect: A systematic review. Age Ageing 2008;37:151-60.
Chokkanathan S. Factors associated with elder mistreatment in rural Tamil Nadu, India: A cross-sectional survey. Int J Geriatr Psychiatry 2014;29:863-9.
Grover S. Elder abuse: Need for awareness. J Geriatr Ment Health 2015;2:65-7. [Full text]
Shankardass MK. Critical understanding of prevalence of elder abuse and the combating strategies with specific reference to India. Indian J Gerontol 2008;22:422-46.
Dong X, Simon M, Mendes de Leon C, Fulmer T, Beck T, Hebert L, et al.
Elder self-neglect and abuse and mortality risk in a community-dwelling population. JAMA 2009;302:517-26.
Schofield MJ, Powers JR, Loxton D. Mortality and disability outcomes of self-reported elder abuse: A 12-year prospective investigation. J Am Geriatr Soc 2013;61:679-85.
Burnes D, Pillemer K, Caccamise PL, Mason A, Henderson CR Jr., Berman J, et al.
Prevalence of and risk factors for elder abuse and neglect in the community: A population-based study. J Am Geriatr Soc 2015;63:1906-12.
Dong X. Elder abuse in Chinese populations: A global review. J Elder Abuse Negl 2015;27:196-232.
Johnson NE. The racial crossover in comorbidity, disability, and mortality. Demography 2000;37:267-83.
Wallman T, Wedel H, Johansson S, Rosengren A, Eriksson H, Welin L, et al
. The prognosis for individuals on disability retirement. An 18-year mortality follow-up study of 6887 men and women sampled from the general population. BMC Public Health 2006;22:103.
Reis M, Nahmiash D. Validation of the indicators of abuse (IOA) screen. Gerontologist 1998;38:471-80.
Cooper C, Selwood A, Blanchard M, Walker Z, Blizard R, Livingston G. Abuse of people with dementia by family carers: Representative cross sectional survey. BMJ 2009;338:b155.
Lee M, Kolomer SR. Caregiver burden, dementia, and elder abuse in South Korea. J Elder Abuse Negl 2005;17:61-74.
Cooper C, Selwood A, Blanchard M, Walker Z, Blizard R, Livingston G. The determinants of family carers' abusive behaviour to people with dementia: Results of the CARD study. J Affect Disord 2010;121:136-42.
Elemary FM, Essa HA, Aly HH. Correlation between caregivers' burnout and elderly psychological abuse. J Am Sci 2011;7:206-14.
Kua EH, Ko SM. A questionnaire to screen for cognitive impairment among elderly people in developing countries. Acta Psychiatr Scand 1992;85:119-22.
Ustün TB, Chatterji S, Kostanjsek N, Rehm J, Kennedy C, Epping-Jordan J, et al.
Developing the World Health Organization disability assessment schedule 2.0. Bull World Health Organ 2010;88:815-23.
Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The Zarit Burden Interview: A new short version and screening version. Gerontologist 2001;41:652-7.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980;20:649-55.
Editors Ustun TB, Kostanjsek N, Chatterji S, Rehm J. Measuring Health and Disability: Manual for WHO Disability Assessment Schedule (WHODAS 2.0). Geneva: World Health Organization; 2010.
Bergeron LR. An elder abuse case study: Caregiver stress or domestic violence? J Gerontol Soc Work 2001;34:47-63.
Anetzberger GJ, Palmisano BR, Sanders M, Bass D, Dayton C, Eckert S, et al.
A model intervention for elder abuse and dementia. Gerontologist 2000;40:492-7.
Luzny J, Jurickova L. Prevalence of elder abuse and neglect in seniors with psychiatric morbidity - Example from central Moravia, Czech Republic. Iran J Public Health 2012;41:27-32.
[Table 1], [Table 2], [Table 3]