Family caregiver mistreatment of the elderly: prevalence of risk and associated factors

This is a cross sectional study, part of a prospective cohort that analyzed the effect of the caregiving role on the health of family caregivers. It was conducted in a Primary Health Care setting. In Spain, Primary Health Care provides universal coverage and free access to health care for the entire population. We contacted the Primary Health Care Centers in the Barcelona province and we invited them to participate. The study includes a sample of family caregivers recruited between 2008 and 2010 from 72 Primary Health Care Centers.

Participants were a convenience sample of 829 family caregivers that, for at least the past 3 years, had taken care in their own homes of individuals aged over 65 years of age with moderate to total dependency [35]. A structured interview was conducted in the home of the caregiver using validated instruments and complemented by a review of the medical records.

Socio-demographic data of the caregiver and the care recipient were: age, gender, living in the same household, educational level (unfinished, primary, secondary, university studies), own income, and relationship (spouses, children, siblings, others).

Logistic regression models were used to identify factors associated with risk of abuse and neglect by the caregiver according to CASE. Gender, age groups of the caregiver and the care recipient, previous relationship, PAC perception, social support, the SPMSQ, Barthel, Golberg and Zarit tools, and aggressive behavior of the care recipient toward the caregiver were included [40]. Data are presented as crude odds ratios, first with all variables forced into a model, and then a final model with significant variables selected using a forward conditional approach.

Confidence level was set at 95% and the level of statistical significance at 0.05. SPSS for Windows version 18 was used for the statistical analysis.

We found that a third of the family caregivers acknowledged a high risk of engaging in mistreatment with respect to their care recipients. They had been acting as caregivers over considerable periods of time, and the risk of mistreatment due to burden, anxiety, or relationship problems was elevated. Data published on the prevalence of elder abuse by caregivers vary greatly [10]. Nonetheless, our study reported a very high percentage (33.4%) compared to other community-based studies, for example from the United States which describe a prevalence ranging from 5 to 10% [14‐16]. Such variations could be partially explained by the different approaches used, in our case we estimated the risk of mistreatment rather than the mistreatment itself, or diverse study populations and varying screening tools. Our results are similar to those of Cooper et al. [18] and the WHO European Report. The latter indicates that the prevalence of elder abuse may be as high as 25% for older people with high dependency, and about one third of family caregivers report being involved in maltreatment [17].

Evaluating the risk of existing mistreatment by means of an interview is complex since it implies the measurement of interpersonal conflicts, multidimensional situations that require contextualization, and a reality that the actors attempt to conceal. A number of approaches, including direct questions and indicators obtained through observation, such as hygiene, malnutrition or bruises, aim to measure the existence of abuse. Another frequent line of action is the use of screening tests which are usually very sensitive but less specific.

Within the context of a population of dependent patients with a high percentage of dementia it was considered inadequate, or even difficult, to interview the care recipient. Consequently, in our study the CASE test for caregivers, an easily implementable screening tool already validated in the English and Spanish versions, was employed [34]. Even though it only indicates risk, the cut-off point of 4 has been consistently associated with a high possibility of mistreatment.

Risk factors are associated with the characteristics of the care recipient, the caregiver, previous family relationships, and environmental factors [2, 12, 41].

Functional dependency and cognitive impairment have been identified as risk factors consistently associated with care recipient abuse [2, 12, 16]. We have previously stated that our sample consisted of dependent care recipients, 64% because of dementia and 36% due to other causes. Interestingly, in our study greater cognitive impairment and functional dependency were not associated with a higher risk of mistreatment. On the contrary, we observed a higher risk of abusive behavior with moderate dependency, especially when the physical/psychological abuse subtype was analyzed. We need to emphasize yet again that, due to the characteristics of our sample, we cannot extrapolate our estimates to the independent or mildly dependent elders in the community. In that context, we suggest the possible existence of an inverted U shaped curve regarding risk of mistreatment and the level of functional dependency, where independent elders might be at lower risk of mistreatment than dependent ones. However, once dependency is total, risk of abuse lowers in comparison to that of less dependent elders. Individuals with less functional and cognitive impairment might present more disruptive behavior and greater interaction with the caregiver, which could be associated with a higher risk of abuse. Thus we found that when the caregiver reported aggressive behavior inflicted by the care recipient the risk of all types of abuse increased, nevertheless, such aggressive situations occurred less frequently when the dependency was total. A finding that corroborates the results of the review by Johannsen et al. [12] and other authors [18, 42] reporting that behavioral problems of the care recipients are a risk factor for abusive conduct in the caregiver. Our study does not show differences in the global risk of mistreatment based on the recipient’s gender or age. In contrast, in a North American study, Laumann et al. observed that women and the less elderly reported suffering verbal abuse more frequently [15].

In our study, the proportion of caregivers with feelings of burden and scores in Goldberg’s scale suggestive of anxiety and depression was over 40%, confirming the negative impact of the family caregiver role. It is clear that such sensations have been associated with a higher risk of mistreatment, indeed, they may translate into experiencing tension, which could result in inappropriate behavior when caring for the elderly. Depression symptoms could also hinder appropriate care and lead to situations of neglect. Such data are in agreement with the results obtained in the recent review by Boye et al. [43] and the studies of Cooper et al. [28, 44], Johannesen [12], and Pérez-Rojo et al. [45]. In the subtypes of mistreatment analyses, caregiver depression was more associated with the presence of neglect risk, possibly explained by the characteristics of depression symptoms, such as fatigue and inhibition.

We highlight social support as an essential factor, since the caregivers who explained that they did not have any help were at a higher risk of perpetrating abusive behavior. In fact, in accordance with the classic risk factors of mistreatment, social isolation is an ideal breeding ground for the development of abusive situations [46].

We also found protective factors, namely: loving, respectful relationships prior to the dependency, social support, and a greater awareness of the positive aspects of care. In agreement with other studies with regard to the relationship between caregivers and care recipients, we found that caregivers with a good prior relationship perceived the ongoing interaction and their role as less stressful, which in turn decreased the risk of abusive behavior [22, 31, 47]. In addition, several authors point out that both institutional and informal support reduces the risk of mistreatment [14, 21, 48].

Our study presents some limitations. They are mainly due to the fact that it includes family caregivers of elderly people who present moderate to severe dependency, with a high prevalence of cognitive impairment. In consequence, the results are only applicable to caregivers of similar characteristics. On the other hand, the frequency of this profile and the evidence that they are a population at risk of engaging in abusive behavior justifies their inclusion in this study.

We have previously mentioned that CASE is a measurement of risk of abuse, but cannot verify whether mistreatment does actually occur. Furthermore, CASE is a tool with high sensitivity but low specificity, and does not screen for sexual abuse or financial exploitation. Nevertheless, we considered it the best available instrument to approach our object of study because it has been validated in our setting and due to the characteristics of the care recipients. In addition, the CASE was administered in a friendly environment and the interviewers contextualized the questions, thus increasing their specificity.

Risk of mistreatment is high among dependent elderly individuals. We emphasize the need to raise awareness of this issue amongst health and social care professionals, increasing the screening activities for early detection and secondary intervention. Detection of elder abuse should be followed up by an intervention plan and close monitoring. A recent systematic review of interventions to prevent and cease elder abuse only showed effectiveness when targeting physical restraint by long-term paid caregivers; there is still a lack of evidence for interventions focusing on abusive family caregivers [49].

Nevertheless, our study has found risk factors in family caregivers that to some extent are preventable, namely anxiety and feelings of burden. Primary prevention activities to reduce risk factors should be individually-focused or community-based interventions. Psychosocial interventions, such as support groups, may have some efficacy in lowering caregiver burden as reported in a review by Adelman [50]. Moreover, there is some evidence from a recent Cochrane review [51] that interventions to promote the mental health of family caregivers may improve their anxiety and depression levels. Whether such programs also reduce occurrence or recurrence of abuse needs to be further studied. It is, however, essential to become aware of these risk factors and their causes (for instance, lack of family or social/health service support) in order to intervene. Interventions that can have a significant impact on the wellbeing of both caregivers and care recipients include education and training, financial assistance for dependency cases, adequate social support, and respite periods for the caregiver. Such actions would create a breathing space for the families to protect their elders and decrease the risk of mistreatment.