WASHINGTON -- The coming crisis in care of an ever-expanding population of dementia patients is "like being headed in a very fast train toward end of cliff," and over-medication of these patients is a big problem, panelists said at a Senate Aging Committee forum on Wednesday.
Currently, there are about 5 million patients with Alzheimer's disease and other forms of dementia, and 11 million family members are caring for these patients, Patricia Grady, director of the National Institute of Nursing Research, in Bethesda, said at the forum. "We're facing the increasing age of the population... The urgency and the tempo is really increasing. Those in this field have feeling we're headed in very fast train toward the end of a cliff."
Although the panel was sponsored by the committee, no committee members were present for the panelists' remarks. Committee chairman Sen. Herb Kohl (D-Wisc.) and ranking member Sen. Bob Corker (R-Tenn.) both gave brief opening remarks and then left, citing scheduling conflicts.
Over-medication occurs often with dementia patients, whose way of complaining about physical illness is often mistaken by caregivers and family members as aggressiveness or unruly behavior, according to the panelists.
Christine Kovach, professor of nursing at the University of Wisconsin, in Milwaukee, gave the example of one dementia patient who kept saying "No no no" and putting up resistance whenever anyone tried to move her. She was put on an anti-psychotic medication, but when she was finally given an X-ray 27 days later, providers discovered that she had broken her hip.
Patricia McGinnis, executive director of the California Advocates for Nursing Home Reform, argued for more informed consent before anti-psychotics are given. McGinnis said her own 89-year-old mother, who does not have dementia, was hospitalized last week for a broken hip. She was discharged to a nursing home and given risperidone (Risperdal), an anti-psychotic.
"She didn't need it," and neither McGinnis' sister, who was taking care of her, nor any of her seven other siblings were consulted, McGinnis said. "I want nursing homes to be accountable. If they're using a lot of antipsychotic drugs, I want to know."
There are many non-pharmacologic solutions that can be used to deal with unruly or aggressive dementia patients, said McGinnis. She cited one study conducted in Vermont that found that learning more about a resident's past to better understand his or her needs and personality, and providing consistent schedules for nursing home staff so they can work with the same residents and pick up on early signs of problems, could help reduce medication use.
A non-pharmacological approach can also help at-home caregivers, said Laura Gitlin, director of the Jefferson Center for Applied Research on Aging and Health at Thomas Jefferson University, in Philadelphia.
"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."