March 9, 2009
More than half of those who cared for a relative with Alzheimer's or another form of dementia admitted to researchers that they had mistreated them, an alarming study from the U.K. reports. Most of the abuse consisted of occasionally yelling at or disparaging the person with Alzheimer's.
The study, from researchers at University College in London, found that the strain of caregiving can take its toll, even among close family members. While about half of the 220 caregivers surveyed reported making occasional verbal threats to those they cared for, about a third said they had committed more frequent verbal abuse. Only three of those surveyed admitted to more serious physical abuse like hitting, slapping or shaking.
"Many people think about elder abuse in terms of 'lashing out' and other similar acts, but abuse can be as simple as shouting or swearing at the person being cared for," said lead author Claudia Cooper of the university's department of mental health sciences. The findings were published in the British Medical Journal.
The authors noted that the results were not surprising, given that people with Alzheimer's are typically cared for in the home by family or friends who often have little or no outside help or support, and the stress of caregiving can be overwhelming at times.
"This is the first representative survey to ask family carers about abuse," Dr. Cooper said. "We found few cases of physical or frequent abuse, although those with the most abusive behavior may have been reluctant to report it or take part in the study in the first place."
The researchers said that health care professionals tended to avoid the issue when talking to relatives.
They wrote: "Professionals are often reluctant to talk about abuse, perhaps because of a fear that discussing and acknowledging it would necessitate referral of an adult for protection and trigger a punitive response such as removal of the person with dementia.
"This may result in an 'all or nothing' approach to abuse, where it is ignored until the problem becomes serious."
"Similarly, clinicians may not consider abuse when seeing most carers, if abuse if perceived as a rare action purposefully perpetrated by amoral abusers."
Study co-author Gill Livingston said that it's important to recognize the problem of abuse among family members who care for a loved one with Alzheimer's.
"Our findings suggest that any strategy for safeguarding vulnerable adults must be directed towards families who provide the majority of care for older people, rather than exclusively at paid carers," he said.
"The vast majority of family carers do a fantastic job under very difficult circumstances," he added. "Health care professionals can be reluctant to ask about abuse by family carers, but this attitude can be very unhelpful to carers who are worried about their own actions and want to talk about them and get help. Considering elder abuse as a spectrum of behaviors could help professionals to ask about it and therefore offer assistance."
The toll of caring for a loved one with Alzheimer's is known to carry an increased risk of physical illness and depression in caregivers. Enlisting other family members and friends to help with daily caregiving tasks can be an important part of helping to maintain mental equanimity and lessen stress among caregivers.
Counseling and support of family members can also be of significant benefit for those caring for a loved one with Alzheimer's, research shows. [See the ALZinfo.org story, "Counseling and Support Benefits Alzheimer's Caregivers"]
"The CARD Study -- Abuse of People With Dementia by Family Carers," published online in the British Medical Journal, 23 January, 2009.