Abuse in families coping with dementia

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

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.