"A recent Johns Hopkins University study of 264 families [surveyed at home] found that of those patients with dementia, 90 percent had home safety issues and 37 percent were not engaged in any meaningful activities," Gitlin said. "For the caregivers, 24 percent had unmanaged health problems and 45 percent had untreated mental health issues. My research suggests that non-pharmacological approaches can address all of these unmet needs."
Non-pharmacologic interventions can include personal counseling, education, hands-on skill training of family members, or simplifying activities to engage people with dementia, according to Gitlin. She noted that an occupational therapy program at her university that tailored meaningful activities to the capiabilities of dementia patients cost $942 per family, as opposed to $1,825 per year for drug treatment. And caregivers saved up to five hours each day in time otherwise spent in hands-on care.
Although the issue of better care for dementia patients has been around for many years, little has been done about the problem at a federal level, several speakers said. "We need a national strategy, a strategy that addresses the full range of issues," said Robert Egge, vice president for public policy and advocacy at the Alzheimer's Association."
Egge said the National Alzheimer's Project Act, introduced last February, is "poised for passage in this Congress." The act would require the Department of Health and Human Services to create a national strategy for overcoming Alzheimer's disease and coordinate research on the disease across federal agencies.
Despite the panelists' enthusiasm for reducing the amount of anti-psychotic drugs given to dementia patients, several experts contacted by MedPage Today/ABC News did not think that over-medication was a problem. "It is a good example of well-meaning people, who do not know what they are doing, criticizing what is mostly appropriate care," Dr. Clifford Saper, chairman of the neurology department at Harvard Medical School, in Boston, said in an email.
"Many patients with dementia have active hallucinations and delusions," Saper continued. "They may act on these, and try to run away, abuse other patients, or create havoc. These behavioral outbursts are the main reason that most families end up placing a loved one in a nursing home." Of course, if there are patients being over-sedated for the sake of the staff's convenience, that should be addressed, he added.
Dr. Martin Farlow, director of the clinical core of the Indiana Alzheimer Disease Center at Indiana University, in Indianapolis, noted in an email that "patients with severe-stage dementias may develop severe behavioral problems, with verbal and physical aggression often features ... Without [the] option [of] drugs, many care facilities would refuse care of these patients, who are often very difficult to care for even with drugs."
A reasonable approach, Farlow said, would be "for these medications to be used when necessary, communicating side effects to family or caregivers, [starting] low [in] dose, then going slow in increasing dose and reassessing frequently for side effects and to determine when the drug is no longer necessary."