WINSTON-SALEM, N.C. – Troublesome symptoms that accompany dementia – including wandering, hallucinations and restlessness – may increase if the patients’ caregivers are young, less educated, over-burdened or depressed, according to researchers from Wake Forest University School of Medicine and colleagues.
“These symptoms are part of the disease and the caregivers aren’t causing them, but certain styles of caregiving may bring them out,” said lead author Kaycee Sink, M.D., assistant professor of gerontology at Wake Forest. “Our study identified characteristics of caregivers that are linked to these difficult behaviors.”
Sink said understanding the link between caregiver characteristics and patient behaviors could lead to more effective treatment. Caregiver education and drug therapy have both proved to be only mildly effective at reducing the symptoms. About 7 million people in the United States have dementia and nearly 100 percent will develop the behavioral symptoms at some point in the illness.
“These results are consistent with the idea that caregiver characteristics, including their emotional state, could contribute to neuropsychiatric (behavioral) symptoms in dementia patients,” said Sink. “For example, it is possible that caregivers who are burdened may be irritable and demonstrate less patience, which could provoke the symptoms.”
The study, reported in the May issue of the Journal of the American Geriatrics Society, involved almost 6,000 patients with dementia, who lived in the community, and their caregivers. Almost half of the caregivers were the patients’ spouses, and 31 percent were daughters or daughters-in-law.
The symptoms assessed in the study were: constant restlessness, constant talkativeness, hallucinations, paranoia, episodes of unreasonable anger, combativeness, danger to self, danger to others, destruction of property, repetitive questions, wandering, and waking the caregiver. Behavioral symptoms are the No. 1 reason for nursing home placement among dementia patients, Sink said, because it becomes too difficult to provide care at home.
The researchers examined data on patients and caregivers from the Medicare Alzheimer’s Disease Demonstration and Evaluation (MADDE) study, which was designed to reduce burden and depression in caregivers of patients with dementia. For the study, caregivers were interviewed to get information about their age, education, relationship to the patient, etc. Standard tests were used to assess caregiver depression and burden, and caregivers were asked about neuropsychiatric symptoms in the patients.
The researchers adjusted for variables that could have influenced the results – such as patient characteristics and severity of dementia. They also attempted to control for the possibility that caregivers’ reports of neuropsychiatric symptoms didn’t reflect the actual symptoms, but were influenced by the caregivers’ depression, education or other characteristics.
The final analysis revealed that caregivers who were younger, less educated, more depressed, more burdened or who spent more hours per week giving care reported more of the behaviors in patients.
The youngest caregivers reported 50 percent more of the behaviors than the oldest caregivers. Each of the characteristics was independently linked to more behaviors in patients. For example, caregiver age alone, regardless of education or depression, affected the number of symptoms.
Sink said that understanding more about the caregiver-patient relationship may help researchers develop more effective education tools.
“We are not trying to blame caregivers, but to better understand the complex puzzle,” said Sink. “If we focus only on the patient, we’re not going to solve the problem. We need to develop better, non-drug treatments to handle these behaviors, and more tailored caregiver education may be one answer.”
Funders of the research included the National Institutes for Health.
Sink’s co-researchers are Kenneth Covinsky, M.D., Deborah Barnes, Ph.D., Robert Newcomer, Ph.D., and Kristine Yaffe, M.D., all with the University of California at San Francisco.
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Wake Forest University Baptist Medical Center is an academic health system comprised of North Carolina Baptist Hospital and Wake Forest University Health Sciences, which operates the university’s School of Medicine. U.S. News & World Report ranks Wake Forest University School of Medicine 18th in family medicine, 20th in geriatrics, 25th in primary care and 41st in research among the nation's medical schools. It ranks 32nd in research funding by the National Institutes of Health. Almost 150 members of the medical school faculty are listed in Best Doctors in America.