Many Alzheimer's Caregivers Admit to Abusive Behavior

By Ed Edelson
25 jan 2009-- More than half of family members looking after people with dementia admit they have behaved abusively toward their relative, a new British study finds.

Actual physical abuse was rare, being reported by only three of the 220 caretakers in the study. But the researchers, who published their findings in the Jan. 23 online issue of BMJ, say that 115 (52.3 percent) of those surveyed acknowledged some abusive behavior toward the relative under care, with "significant" abusive behavior described by 74 (33.6 percent) of caregivers.

The results indicate "the extreme difficulty of caring for persons with dementia," said study author Dr. Claudia Cooper, a psychiatrist and research training fellow in health sciences research with the Medical Research Council, the British equivalent of the U.S. National Institutes of Health.

The most common form of abuse (26 percent) was screaming or yelling at the person with dementia. Insults or swearing accounted for 18 percent of reports, with threats of sending the person to a nursing home happening in 4.4 percent of cases.

"Mostly people said they wished it hadn't happened," Cooper said. "People with dementia can act aggressively. They [the caretakers] were reacting to being the subject of aggression or being in a difficult situation."

The British government is considering a revision of its policies for safeguarding vulnerable adults, focusing on paid caretakers. The newly reported study of family caretakers was done, because "previous smaller studies that asked about abusive behaviors reported high rates," Cooper said. "Given those studies, which indicated that about a third of family carers reported significant abuse, we needed to know more about it."

Cooper and her colleagues interviewed family members of people living at home with dementia in London and in Essex, a borough near London. The results were pretty much as expected, she said. "We predicted that a third of family carers would report significant abuse. We also expected few cases of physical abuse or frequent abuse."

The study is part of a larger program aimed at reducing abusive behavior in such families, Cooper said. "We need to know exactly what is going on before looking for ways to reduce it," she said.

The incidence of such abuse in the United States is not known, since comparable studies have not been done here, said Beth A. Kallmyer, director of client services at the Alzheimer's Association. But the association "gets a lot of questions about it," Kallmyer said, enough so that it maintains a 24-hour telephone service, at 800-272-3900.

"One of our messages is that people can't do this alone," Kallmyer said. "It is a progressive disease, so that the ability of the person being cared for diminishes with time. That creates great stress."

To help caretakers determine whether the stress has grown too great, the association has provided a caregiver stress test, at www.alz.org/stresscheck, she said.

"We want them to reach out, because if they don't reach out they get burnt out," Kallmyer said.

Another report in the same issue of BMJ dealt with a different matter of concern for the elderly: the effectiveness of specialized geriatric hospital units.

Older people who are cared for in such units have a better chance of returning home after discharge than those treated in conventional hospital facilities, said a report by physicians at the University Hospital of Getafe in Madrid.

A review of 11 studies that compared care provided by acute geriatric units run by specialists with conventional hospital units found elderly patients had a better ability to function back at home and a reduced risk of returning to the units in the three months after discharge.

But further studies are needed to determine if the benefits persist over the longer term, the report said.

More information

For more on elder abuse, go to the The AGS Foundation for Health in Aging.