Abuse in families coping with dementia – includes a related article with a case study – Special Populations: Families Coping with Dementia
Andrew C. Coyne
Verbal abuse, bruises on an elderly person’s arms or legs from restraining, squeezing, or pinching — this can happen when caregivers become depressed, angry, and overwhelmed in trying to provide care for a family member suffering from dementia.
Caregivers can also be on the receiving end of verbal or physical abuse directed at them by parents or spouses who are confused and angry over declining mental capacities due to stroke and Alzheimer’s disease. In some cases, Alzheimer’s disease or other forms of dementia may cause the patient to be uncharacteristically aggressive. In other cases, verbal abuse or physical violence may have been typical of family interactions before the illness.
The following case history demonstrates how an overwhelmed caregiver can become abusive. The case also raises questions about how resilient second marriages will be in dealing with the stress of caregiving, because the husband and wife and adult children have had only a short period in which to develop natural feelings of duty and obligation.
When Jim Donnely, 70, discovered that his second wife Joyce (not their real names) had Alzheimer’s disease two years after their marriage, he naturally felt overwhelmed. He enrolled his wife in a dementia day care program three days a week where he was also able to receive counseling focused on caregiving issues. It was during these sessions that Jim expressed his constant grief over the loss of his first wife, Barbara, and how lonely he was feeling at the time he met Joyce. He also began to express his anger at the illness afflicting his wife, an illness that demanded of him devotion that spouses often have difficulty providing even after 40 years of marriage.
Several years passed and as Joyce’s illness progressed, day care staff became concerned over her frequent reactions when her husband arrived — “I don’t want to go with that man,” or “I’m afraid of him.” Although a failure to recognize one’s spouse or even delusions surrounding “replacement” of one’s spouse by a stranger may accompany dementia, Joyce Donnely appeared to be displaying actual fear of her husband. At the same time, her attendance at day care became sporadic, and her husband’s complaints of feeling overwhelmed increased.
During this period, the staff reported bruises on Joyce’s arms which were painful to the touch. When they confronted Jim in a firm but not rejecting manner, he admitted that at times he became so frustrated with Joyce that he would grab her and shake her. It also became clear that as his wife’s illness got worse, his anger and frustration grew, farther increasing the likelihood of abuse.
With Jim’s permission, Day Program staff began including other members of the Donnely family in discussions of the caregiving situation and future planning for Mrs. Donnely’s care. Family members said they were aware of Jim’s frustration with Joyce and that, at times, he did “become rough” with her. They were able to tell him openly that he must not continue this abusive behavior and offered suggestions, such as walking away when he felt frustrated or calling one of them on the phone before he reached the point where his patience might snap. These suggestions were continually reinforced during weekly sessions. Nursing home placement for Joyce was also discussed, an option that Jim resisted. He did agree to try a home health aide, although he later said he felt his privacy was interrupted and his stress still remained after the aide departed for the day.
Joyce continued, however, to show evidence of abuse, particularly after foot surgery required a prolonged stay at home. When the Day Program staff made a home visit, bruises were observed up and down her legs. Jim admitted to causing these injuries, stating that he had difficulty washing his wife and that the bruises were a result of pinching her. Another much more serious injury also occurred during the same time period, although Jim never indicated whether or not it resulted from his actions.
Day Program staff continued to work with Jim and his family in an effort to break the pattern of stress and anger. Then, Jim became ill himself and was hospitalized. No other person was willing or able to care for Joyce and she was placed in a nursing home with her husband’s cooperation and consent. Once he was relieved of the day-to-day burden of his wife’s care, he was able to relate to her in an appropriate manner. He frequently took Joyce out of the nursing home on small excursions and, on several occasions, escorted her to social events held at the Day Program.
How typical is this case? How often do caregivers abuse relatives in their care? How often do patients with Alzheimer’s or other forms of dementia direct abuse at their caregivers? Although there is not yet sufficient research addressing these questions, several recent studies shed light on the scope and frequency of the problem.
What The Studies Show
Findings from recent investigations have served to highlight the presence of dementia as a risk factor for abuse.
Paveza and his colleagues (1992) examined violent behavior in a sample of 184 Alzheimer’s disease patients and their primary caregivers. Included in the battery of measures administered was a modified version of a “severe violence” subscale which collects data on the occurrence of hitting, kicking, biting, and punching behaviors as well as the threat or use of a weapon.
The most important finding of this study was that severe violence was reported to occur in 17% of the patient-caregiver pairs studied. This figure included patient violence toward caregivers (16%), caregiver violence toward patients (5%), and mutually violent behavior (4%). In terms of what predicted such violence, Paveza and his colleagues reported that significant risk factors were increased levels of depression in caregivers and a situation in which a patient, without a spouse, lived with family members in the same household. Interestingly, severity of dementia and functional impairment were not found to be related to the occurrence of violence.
In a related study by Hamel and his colleagues (1990), face-to-face interviews were carried out with 208 caregivers and their patients who had been diagnosed with a dementing illness for at least one year. The average age of the caregivers was 63, nearly 70% were women, and the mean duration of care provided was 3.2 years.
More than half (119 or 57%) of the patients exhibited some form of aggressive behavior, according to the caregivers. The most common forms of aggression were verbal, reported for 106 patients (51%); physical, seen in 71 patients (34%); and sexual, noted for 17 patients (7%). The overall frequency of aggressive behavior as reported on a daily basis, however, was relatively low. For example, verbal aggression — while the most common type of aggression reported — was only exhibited daily by 10.6% of patients. Finally, caregiver responses to patient aggression were also indexed. “Feeling angry” was reported by 10% of caregivers and another 10% reported acting aggressively, themselves, in response to patient aggression.
The researchers concluded that aggressive/violent behavior involving dementia patients and their caregivers is most commonly verbal in nature. They found that the triggers for such behavior tend to involve the caregiver directing the patient to “do, something.” Extent of cognitive impairment was not found to be a good predictor of aggression, although a history of displaying aggression before the illness was. The study concluded that “patients who respond aggressively when confronted with frustrating situations are probably reflecting long-standing patterns of response to frustration.” The researchers also found that “caregivers who report the earlier relationships between patients and themselves were more problematic are likely to encounter more aggressive patient behavior.”
In yet another investigation, Pillemer and Suitor (1992) reported that of 236 caregivers to dementia patients, who took part in face-to-face interviews, 46 or 19% feared becoming violent while providing care and 14 or 6% actually engaged I in violent behavior during the course of caregiving. Caregivers who feared becoming violent were more likely than the other caregivers to have had violence directed at them by the patient and to be caring for a patient whose behavior was sometimes disruptive. Furthermore, lower self-esteem on the part of caregivers and a living arrangement characterized by the caregiver and the patient living together were associated with the caregiver’s fear of becoming violent. Finally, with regard to those caregivers who actually became violent, such behavior was also correlated with having been abused by the family member now being cared for and by being the spouse of the patient.
One additional study by Coyne and his colleagues (1993) involved the distribution by mail of a 30-item questionnaire to 1,000 consecutive callers of a telephone helpline dealing with issues related to dementia. Of the 1,000 questionnaires distributed, 277 completed and usable questionnaires were returned. The mean age of the caregivers responding was 56, 71% were female, the average age of the patients was 76, and they had been exhibiting symptoms of cognitive impairment for an average of 4.6 years. With regard to physical abuse, 12% of the respondents (33) indicated that on at least one occasion since becoming a caregiver, they pinched, shoved, bit, kicked or struck their cognitively impaired family member. Moreover, 33% (92) of the respondents indicated that the patient in their care directed physical abuse towards them at least once. Caregivers who reported being abusive, compared to those who were not, were found to be providing more hours of care per day, to be caring for more functionally impaired individuals, to be shouldering higher levels of burden, and to be more likely to be depressed. These descriptions were also true of caregivers who reported being on the receiving end of abuse.
Physical aggression by elderly patients appeared to trigger the same behavior in some caregivers. Specifically, 26% of the caregivers who were on the receiving end of physical aggression reported that they were abusive toward the patient. This was true of less than 5% of caregivers not abused by patients. Finally, while only 9% of caregivers (24) reported that their family members had been abusive prior to becoming demented, these caregivers were more likely than others to be abused by the patient and to be abusive in return.
Higher Risk of Abuse for Demenia Patients
The studies described in this article have raised several common issues. The first involves the prevalence of abuse in families caring for a dementia patient. Although it is very difficult to make comparisons between surveyed adults and a general community population, it is of interest to note that the estimates of the prevalence of physical abuse of elderly dementia patients by caregivers — ranging from 5% in the study conducted by Paveza in 1992 to 12% in Coyne’s study in 1993 exceed the 1% to 4% prevalence rates for physical abuse typically cited for all community-residing older people in the U.S. While some of the variation in estimates may be related to differences across studies in definitions of abuse employed and methodologies utilized, it appears that the presence of dementia increases the risk of abuse occurring within the caregiver-patient pair. Secondly, each of the studies discussed above points to the reciprocal nature of abusive behavior involving dementia patients and their caregivers. Evidence suggests that aggressive, combative, or violent behavior seen in Alzheimer’s disease and other dementias plays a role in triggering abuse from caregivers. Similarly, a lack of understanding on the part of caregivers and health care professionals as to how to best manage aggression in patients may further provoke such reactions and increase the likelihood of abuse.
Third, a history of family violence prior to the onset of dementia appears to be associated with a greater likelihood of abusiveness between caregivers and patients once dementia occurs. Although such a “cycle of abuse” (Steidmetz, 1988) is difficult to break, interventions such as supportive counseling and individual or family psychotherapy for caregivers, respite or in-home care services for patients, and alternative living situations for all parties concerned may be helpful (Burkhard, 1990).
Finally, there appears to be a relationship between abuse of a family member and caregiver burden and depression. Those caregivers who report directing abuse toward patients are often more stressed or burdened by caregiving responsibilities and display minor levels of depression than individuals not engaging in abuse. Interventions to reduce burden and treat depression should serve to limit abuse.
Problems with Mandated Reporting
Reporting of suspected cases of abuse, no matter how defined, is mandatory in many states, although variation exists in terms of which professional groups must report abuse and to whom reports are made (e.g., human service agencies, law enforcement agencies). The majority of laws enacted categorize abuse of an adult as either a misdemeanor or a felony. Substantiated reports of abuse are typically referred for prosecution under statutes involving assault or domestic violence. Failure to report abuse also may entail penalties in many states.
There are many professionals who believe that the mandate to report suspected cases of abuse can jeopardize the relationship between the professional and the client. Doctors, social workers, and other health care professionals are concerned that the response from the designated agency may be too punitive. Laws and statutes may be brought into play that can lead to a loss of trust on the part of the caregiver, thus setting up an adversarial relationship and destroying the opportunity to work cooperatively.
For example, in the case history presented earlier, immediate and mandatory reporting of suspected abuse involving Mr. and Mrs. Donnely might have made it impossible for Day Program staff to establish a relationship with Mr. Donnely. This, in turn, might have led to Mrs. Donnely’s removal from day care, thereby increasing her isolation and the level of stress at home and potentially leading to more incidents of abuse.
There may be concern among health professionals that a mandatory intervention may result in the premature removal of a patient from his or her home and in a complete cut-off from the caregiver. Such an outcome may not be desirable for either the older individual or the caregiver.
One way we can help to make older adults less vulnerable is by providing them with the concrete services necessary to upgrade the quality of their lives and by providing their caregivers with the support and services required to extend their ability to cope with what can be very heavy burdens. Further research is also needed to refine our understanding of dementia as a risk factor for abuse and to determine how best to help family members cope with the demands of caring for a cognitively impaired relative without resorting to abusive behavior.
Dr. Andrew C. Coyne is Coordinator of Research and Program Development of the Comprehensive Services on Aging (COPSA) Institute for Alzheimer’s Disease and Related Disorders, at the Community Mental Health Center at Piscataway, a part of the University of Medicine and Dentistry of New Jersey, and Assistant Professor of Clinical Psychiatry in the Division of Geriatric Psychiatry at the Robert Wood Johnson Medical School. Mildred Potenza is Coordinator of Community Services and Liaison for the COPSA Institute and Lisa J. Berbig is the Coordinator of COPSA’s Adult Day Program. The COPSA Institute is funded in part by a grant from the Gerontology Program of the New Jersey State Department of Health.
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