Turmoil in life’s final chapter
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.
Conditions such as hypertension, osteoporosis, diabetes, arthritis, heart disease, perhaps cancer or mental illness, each require a formulary of sometimes two or three different drugs. Many patients also take over-the-counter medications and herbs and teas, which pose still more complications as their side effects, drug interactions or simply the way they metabolize in the liver have not been studied.
“The use of any medication in the elderly is associated with an increased risk of side effects,” Lavretsky says. “The risks of each medicine have to be assessed very carefully in the context of complex management with other drugs.”
Could a particular blood pressure medicine, in a particular person who is, for example, diabetic, dangerously interact with an antipsychotic? It is impossible to accurately predict each individual case, but after years of trial and error, the most judicious strategy, she says, is to use “one drug instead of many, and the lowest dose of that drug.”
The drugs themselves create even more challenges for the clinician.
As in the case of the antipsychotics, some of the medications used to treat behavior have serious physical side effects. But some of the drugs used to treat physical problems can have what McLean’s Ellison calls “behavioral toxicity.”
For example, it is very common for older people to be on anticholinergics -- medications that block a neurotransmitter that is important in the brain for memory. Some of the medicines that help people sleep, even over-the-counter medications, or others that help patients cope with incontinence are anticholinergics.
An incontinent patient with dementia, who requires procholinergic medication for cognitive function and anticholinergic medication for the incontinence, presents a problem doctors encounter infrequently with other groups of patients.
“That is the problem with the aging body,” Ellison says. “You solve one problem and you create another.”
Simi Valley resident Lowell Dreyfus saw the truth of this observation during his father’s illness.
His father suffered from Alzheimer’s in the early 1990s, before atypical antipsychotics were available. At one point, his father’s confusion and agitation became unmanageable for his mother, and his slow decline seemed to spin out of control.
After weeks of rages and incontinence, he tried to climb out on the balcony and jump off. His wife was able to restrain him long enough for a neighbor to call the police.
It took six officers to subdue the 80-year-old man before they took him to the emergency room in handcuffs. He was then taken to a downtown Los Angeles mental health facility, where he remained for three days and was given a large dose of the older antipsychotic medication Haldol.
Dreyfus’ father reacted badly to the medication. “He was unable to wake up and completely bloated, like someone pumped him full of steroids,” his son recalls. “I said to them, ‘What have you done to my father? He was lucid yesterday morning, and today he is a vegetable.’ ”
His father eventually recovered from the episode and was given a cognitive enhancer -- a drug that addresses specific memory problems, not behavioral ones. He responded miraculously to it.
After another two years of relative health and even clarity, he eventually succumbed to the disease.
As terrifying as the Haldol episode was, however, Dreyfus still believes in the importance of drugs -- whether antipsychotics or other medications.
“Unless a person really firsthand lives with this type of disease, it is very difficult to understand,” Dreyfus says. “And I believe that whatever drug is out there that can lessen the pain and make it easier for everyone to deal with the situation has to be tried.”
Complicated decisions
Eventually the progression of time makes old age fatal for everyone. But researchers point out that even for the most frail and vulnerable among us, there are ways to make the final chapter of life a gentle one.
With a growing number of people living well into their 80s, and leaving spouses and children to weigh complicated choices, the question of how best to make these decisions lingers.
The possibility of antipsychotic medication was always in the back of Laurel DuBeck’s mind as she confronted her father’s deterioration from Alzheimer’s four years ago. At 81, he had a mass of complicating conditions -- Parkinson’s disease, diabetes, heart disease -- but they didn’t compromise his strength or his rages when she tried to awaken him in the morning and help him out of bed.
“He would yell at me and swat at me because I was doing it ‘wrong,’ ” recalls DuBeck, a nurse from Zanesville, Ohio. She didn’t try to persuade him to change his mind, however. Rather, she distracted him with a conversation about the weather or their plans for the day, and his rages would subside. He was “unable to deal with two things at the same time,” so distraction worked, she says.
DuBeck understood that the atypical antipsychotic drugs can sometimes be the only way to calm a patient, especially when the paranoia gets out of control. But the enormous quantity of medications that her father took for his other illnesses dissuaded her from adding another one. “I just didn’t want to give him anything that I didn’t have to,” she says.
Geriatric psychiatrists agree that other health risks and realities, such as illnesses or medications, must be considered. Sometimes antipsychotics will be an option. Sometimes they won’t. Regardless, Lavretsky says: “We just have to be very careful with everything that we do.”
