Perhaps the cruelest paradox of dementia -- both for sufferers and their caregivers -- is that memory loss is the least horrible of its symptoms.
It's not the grown child's name forgotten or the pill not taken or the suddenly lost sense of place that drives the elderly from homes to institutions, but the unmanageable aggression, the uncontrolled paranoia, the inappropriate sexual behavior that ultimately afflict 90% of those who suffer dementia.
"Many people get pulled out of their homes and put into institutional settings because the caregivers just can't handle all the other symptoms," says Dr. Dilip Jeste, head of geriatric psychiatry at UC San Diego medical school.
Treating these caustic symptoms is heartbreaking and complicated -- and has only grown more so in the past year.
Last April the U.S. Food and Drug Administration issued a public health advisory about newer drugs used to treat dementia, known as atypical antipsychotic medicines. These medicines, though approved for other conditions, caused far fewer side effects than traditional antipsychotic drugs, so patients and their families were more likely to stick with them. As a result, the drugs were widely viewed as more effective.
But, as the agency alerted caregivers and patients, the drugs can cause unexpected death in a small number of elderly people who take them to treat behavioral symptoms. The result was a "black box" warning describing the risk of using the drugs for the treatment of geriatric dementia.
In the year since these warnings were issued, healthcare providers, families and caregivers have had to weigh the risks and benefits of these medications while coping with the suffering of vulnerable patients who are unable to make decisions on their own.
Many returned to older antipsychotic medications, with their more serious side effects, such as a Parkinson's-like syndrome that makes people's faces contort.
Others, after examining the data, decided to continue with the newer medications, says Dr. Helen Lavretsky, professor of geriatric psychiatry at UCLA's Semel Institute for Neuroscience and Human Behavior.
Subsequently, a large epidemiological study, which appeared in the New England Journal of Medicine in December, found that there was very little difference in terms of mortality rates between the two classes of drugs.
"We have to remember that the risk of dying is still small," says James Ellison, clinical director of geriatric psychiatry at Harvard's McLean Hospital.
And the potential benefits of the newer drugs are huge -- getting out of the hospital, moving into a nursing home or assisted living facility, not being agitated or aggressive.
To help determine who is most at risk from the newer drugs' most dangerous side effects, experts say, a diagnosis may be crucial. Although many symptoms of Alzheimer's and dementia look very much alike -- memory loss, agitation, behavioral changes -- there are important differences.
Dementia is typically caused by small strokes that cut off blood flow in the brain and inevitably impair function. Over the course of a lifetime, the likelihood of suffering from the disorder increases. It affects one person in 20 over age 65 and one person in five older than 80, according to the Alzheimer's Assn.
An early study of the atypical antipsychotics established a connection between the drugs and subsequent strokes, heart attacks or pneumonia. But in trying to determine which patients were the most vulnerable to these catastrophic events, researchers found that a number of the patients in the studies had other risk factors for stroke, such as diabetes or high blood pressure.
"Can you prove that the drug caused the stroke or death with these patients?" Jeste asks. "It is really hard to prove the connection; nonetheless, you can't dismiss it."
In Alzheimer's disease, which accounts for 55% of all cases of dementia, the deterioration comes not from strokes but from the accumulation of layers of plaques in the brain that smother neuronal function. The Alzheimer's Assn. estimates that 4.5 million people have the disease today, but it anticipates that by 2050, 16 million will be affected.
Regardless of the diagnosis, or the resulting therapies, the effective treatment of such behavioral symptoms is a public health problem.
"This is a big issue," says Dr. Dan Blazer, the president of the American Assn. for Geriatric Psychiatry. "It affects an enormous number of people, and for the individuals who suffer, life is miserable."
Dueling medications
Treatment of dementia and its related behaviors is further complicated by other drugs and drug interactions.
According to a 2003 report by Families USA, a Washington, D.C.-based consumer health organization, although seniors make up only 13% of the total population, they account for about 34% of all prescriptions dispensed and 42% of all prescription drug spending.
Lavretsky says her typical patient is taking 15 prescription medications.
