University Times

Until treatments for dementia are found, researchers must seek ways to best care for people who have the condition, said the author of one of the first guides for families caring for loved ones with Alzheimer’s disease. “We need to be working on both sides: looking for cure, for prevention — and figuring out how to best care for people,” said Peter V. Rabins, professor of psychiatry and behavioral sciences and co-director of the Division of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins School of Medicine, who presented the 2010 Jay L. Foster Memorial Community Lecture last month at Rodef Shalom Congregation.

Rabins co-authored “The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias and Memory Loss in Later Life.” The 1981 book is now in its fourth edition and has sold 2 million copies.

The Foster community lecture, presented in partnership with Pitt’s Graduate School of Public Health, aims to educate family members, caregivers and others about dealing with the illness.

Early detection has been the focus of much research in the field, Rabins said, which will be especially important once good treatments are developed. In the meantime, given that most people who have Alzheimer’s disease die from it, we need to better understand how to care for them, said Rabins, whose recent research has focused on caregivers’ decision-making and quality-of-life issues for people who have late-stage Alzheimer’s disease.

Dementia defined

Dementia is defined as any disease that begins in adulthood and impairs two or more aspects of thinking, Rabins said. While some 75 different diseases can cause dementia, Alzheimer’s disease is the most common, responsible for about three-quarters of all dementia cases, Rabins said.

Although Alzheimer’s typically is considered a memory disease, “The irony is that most of the disability, most of the struggles that the patient has and the family have are actually from the non-memory cognitive function symptoms,” Rabins said.

In spite of the notion that Alzheimer’s disease only can be diagnosed after death, Rabins said doctors can diagnose it with approximately 90 percent accuracy in living patients. Those who later are found not to have Alzheimer’s typically had some other form of dementia, he said.

Following a medical, neurological and psychiatric assessment to rule out other causes such as Parkinson’s disease, lupus or  multiple sclerosis, criteria for an Alzheimer’s diagnosis include a decline in memory coupled with at least one of the following: difficulty with language or communications (aphasia), difficulty with everyday activities (apraxia) or difficulty with one’s ability to see the world accurately (agnosia), Rabins said.

Alzheimer’s disease progresses slowly, he said. “Most people don’t come to their family’s or their doctor’s attention for at least two years,” he said. “If you’re retired and you’re living a pretty routine life, you actually don’t depend on memory all that much. If you’re lucky enough to have a spouse or live with somebody else, they remind you when your doctor’s appointment is, or the occasional out-of-the-ordinary things. Once you start becoming dysfunctional, having trouble doing things you’ve done all your life, that’s what gets people’s attention.”

The general course of Alzheimer’s disease progresses over an average of about 10 years. During the initial three years, memory impairment is the most obvious symptom. In the next three years, a patient may develop problems communicating, performing everyday tasks or seeing the world accurately. “This is when people start to get lost while they’re driving or have trouble doing their checkbook,” Rabins said.

The next three years may include physical decline: the patient develops difficulty walking, loses bladder or bowel control, becomes mute or develops language problems. Swallowing and feeding problems also may appear.

Some 40 percent of people with dementia die of pneumonia due to aspiration of saliva or food into their lungs, Rabins said.

Dementia is very rare prior to age 60, Rabins said. After that age, the risk steadily rises. Conservative estimates indicate that by age 90, 30 percent of people have dementia.

Age 80 is the most common age of diagnosis, he said, noting that about 20 percent of 80-year-olds have dementia. “That still means that 70-80 percent of 80-year-olds are cognitively normal,” he pointed out.

Ongoing research finds 9.5 percent of residents over age 64 in Cache County, Utah, have dementia. The county has the nation’s longest life expectancy. Of those with dementia, about 22 percent are in the late stages of the illness. Nationwide, that equates to about 1 million people, Rabins said.

Public health impacts of dementia

The incidence rates, coupled with lengthening life expectancies,  create some worries for Social Security and Medicare, he said.

“We are living through a revolution in human life expectancy,” Rabins said, noting that since 1830 life expectancy has increased by three months each year and appears not to be leveling off.

And, while the majority of the increases between 1850 and 1950 were due to lower infant mortality, today’s gains are at the other end of the lifespan. Given that people in their 80s and 90s are living longer and that dementia affects 4-8 percent of the population, “The absolute number of people who are likely to get these diseases is going up exponentially,” Rabins said.

Many projections fail to account for these increases in life expectancy, meaning that the number of people with these diseases likely will increase faster than expected. “From a public health perspective, this is a huge issue,” he said.

Clinical and ethical issues also arise. “We live in a culture where people believe in autonomy, that people should make decisions for themselves. And yet in advanced dementia 100 percent of individuals are robbed of that ability. So there are a lot of ethical issues,” such as what to do with dementia patients who stop eating, for example, and who should make decisions for them, Rabins said.

Another issue is that most people with advanced dementia do not speak correctly or clearly, he said. “How do you detect pain in someone who can’t say ‘my leg hurts’, ‘my back hurts’? That’s a challenge.”

Late-stage dementia patients may have problems walking or may fall frequently. “Since we want to keep them independent, how do we balance the risk of falls with allowing them to be independent?”

Advance directives present an additional challenge, he said, noting that research shows that about half of people change their advance directive at some point in their life, often after they get sick. “And usually it’s in the direction of wanting more, not less, treatment. But people with dementia can’t do that,” he said. “How do we deal with that?”

Public health considerations also arise from the financial issues surrounding the disease. Dementia adds to medical costs, affecting hospital as well as nursing home beds. “This is a group of diseases that interact with every other health problem,” Rabins said. “It turns out that people with dementia stay twice as long in the hospital for the same medical condition at the same age as people without dementia.”

If 8 percent of the population has dementia, that equates to 20-25 percent of hospital patients having dementia, “There’s a huge added medical cost,” he said.

In addition, Rabins said, “The single biggest item in almost every state budget in the United States is medical assistance. And the single biggest medical assistance cost is nursing costs.”

He estimated that 75-80 percent of the 3 million people in nursing homes and assisted living facilities in America have dementia.

“If we could come up with a prevention or effective intervention for Alzheimer’s, there would be very few nursing home beds,” Rabins said, likening it to the way improved treatments have eliminated the need for tuberculosis sanitariums.

Research findings

In a study of 125 people with late-stage dementia who met hospice criteria (they were likely to die within six months), Rabins and colleagues found that, matching for medical severity, those who were hospitalized in the last six months of life had a lower quality of life compared to people who were not hospitalized.

Rabins said 41 percent of the patients studied were sent to the hospital at least once during those six months; about 90 of them died during that time.

The most common reasons for hospitalization were infections (typically bladder or respiratory), delirium, confusion or dehydration, or falls.

Except for fractures, Rabins believes many such conditions could be better managed in a nursing home. “Sending people to the hospital is probably to nobody’s benefit,” he said, given that not only has aggressive care been found to be bad for the late-stage dementia patient’s quality of life, but that it also is expensive.

“We need to be thinking about how do you take care of people in place.”

Researchers also found that higher quality of life correlated to a lower rate of behavior problems, including agitation or other psychiatric symptoms. “That’s maybe something we can help by improving the environment,” Rabins said.

In addition, people who had pain identified by their caregivers actually had a better quality of life. “Whether that’s because maybe they were on opiate medication or because it was relieved, I don’t know,” Rabins said.

“This suggests to me that there are at least two different things we can do to make the quality of life potentially better: By supporting people and making their behavioral problems less, and by treating their pain, it’s plausible that we can improve their quality of life.”

Support for those responsible for patients with late-stage dementia also is crucial. The researchers’ study of whether the existence of an advance directive made decision-making harder or easier yielded mixed results.

In cases where an advance directive was in place, decision makers were asked whether that made the choices — for hospitalization, feeding tubes, testing or other medical procedures — easier. “In the case where advance directives stated the patient didn’t want artificial feeding, the surrogates found that helpful. But they did not find it helpful in anything else,” Rabins said.

They also were asked whether they were satisfied with their decision. “Whenever people made a decision to do something — yes they can have blood work, yes they can have a feeding tube, yes they can go to the hospital, they almost always said ‘That was not a hard decision and I’m very satisfied with it,’” Rabins said. Conversely, when they decided against a treatment option, “many more people found that a difficult decision, and were not really satisfied,” he said.

In light of these findings, Rabins suggested that medical personnel not only provide information about the value of proposed treatments, but also support decision makers by acknowledging that the choices they face are difficult.

Even when such issues have been discussed before the patient became ill, “It’s still hard for people. These are tough decisions even in late-stage disease.”

Rabins’s lecture and the accompanying panel discussion are posted at www.publichealth.pitt.edu/lecturearchive.

—Kimberly K. Barlow