By Susan Jeffrey
January 27, 2009 — About one-third of family caregivers admit to abusive behavior toward their family member with dementia, mainly verbal abuse, a new survey suggests.
Although levels of physical or frequent abuse were low, those with the most abusive behavior might have been afraid to report it in this voluntary survey, the researchers say.
“I think this sends a message to family carers who are having these problems that they’re not alone and sends a message to professionals that this is something that really warrants asking about routinely,” first author Claudia Cooper, MD, from the department of mental health sciences at University College London, in the United Kingdom, told Medscape Neurology & Neurosurgery.
“There is this feeling that elder abuse is something that is severe and rare, and outside of a few serious cases, it doesn’t happen,” she added. “We’ve shown that’s not true, and so we hope that would encourage professionals to ask about this.”
Their report is published online January 22 in BMJ.
Elder abuse has been put forward as a priority for both the British and American governments, but most of the action in the United Kingdom at least has focused on the reduction of abuse toward vulnerable elders by paid caregivers, the authors write. The inference is that caring family members would not act abusively when there is a family relationship with the person with dementia.
However, the current work by Dr. Cooper and colleagues on this problem stemmed from conversations they had with family caregivers in their own psychiatric practices, she said. “When you actually started to ask routinely, a lot of carers had had these experiences and wanted to talk about them. We began to feel that maybe this was something doctors needed to be asking routinely about, but we didn’t have the evidence.”
To determine the prevalence of abusive behavior among family caregivers, they carried out a cross-sectional survey of 220 family members of people with dementia living at home who had been newly referred to secondary psychiatric services.
They used an instrument that had been developed for family caregivers of frail elderly by Scott Beach, PhD, from the University of Georgia, in Athens, and colleagues. The survey was administered by 3 trained psychiatrists; caregivers were asked about abusive behaviors ranging from shouting and swearing or threatening the patients with institutionalization, to hitting, slapping, or withholding food. They could respond on a sliding scale ranging from “never” to “sometimes,” “most of the time,” or “all of the time.” The threshold for abuse was defined as those behaviors reported “sometimes.”
They found that 115 caregivers, over half, reported some abusive behavior (52%; 95% CI, 46% – 59%), and 74, one-third of caregivers, reported important levels of abuse (34%; 95% CI, 27% – 40%). Abuse was mostly verbal; only 3 caregivers (1.4%) admitted to occasional physical abuse.
Reluctant to Report?
However, some may have been reluctant to report abuse, they note; the consent sheet specified that the researchers would respect confidentiality, “but we cannot keep it a secret if anyone is being seriously harmed.”
“It was predominantly verbal abuse that they were admitting to, but I think it’s nonetheless important in that it’s an important sign of people who need more help,” Dr. Cooper pointed out.
“We suggest that any policy for safeguarding vulnerable adults must consider strategies directed toward families who provide the majority of care for older people, rather than exclusively formal caregivers,” the authors conclude. “Considering elder abuse as a spectrum of behavior rather than an ‘all-or-nothing’ phenomenon could help professionals to feel more able to ask about it and therefore offer appropriate help.”
Beyond just asking about this as part of good dementia care, Dr. Cooper added, “it’s about what you do when you find it.” A simple example may be the recommendation for more respite care, she said.
However, there are currently few evidence-based interventions to reduce abuse, she added. “The problem is we don’t know enough about how to prevent abuse, and this is going to be our next area of study.”
The study was funded by a research training grant to Dr. Cooper from the Medical Research Council. The researchers report no competing interests.
BMJ. Published online January 22, 2009. Abstract