Abuse in families coping with dementia

Aging,  Spring, 1996  by Andrew C. Coyne,  Mildred Potenza,  Lisa J. Berbig

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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.