Keeping Alzheimer's at Bay
By: Source: AARP Bulletin Today Date Posted: 2003-08-04 10:57:42
Doctors are paying closer attention to the early stages of Alzheimer's disease, when there's a greater chance of enabling patients to lead normal lives longer.
The results so far are encouraging, thanks to improved diagnostic techniques and drugs that can slow the degenerative brain disease in its initial phases.
Putting the spotlight on early Alzheimer's is changing "the predominant image of someone with Alzheimer's as not very capable, not very aware, not very able to do things for themselves," says Robyn Yale, a clinical social worker in San Francisco who pioneered early-stage Alzheimer's patient support groups.
In fact, patients in the early throes of the disease can do many things for themselves, Yale says.
Leslie Dennis, 66, of Chicago is one of them. He was diagnosed with the disease more than two years ago, but that hasn't stopped him from volunteering at a local botanical garden and traveling with his wife, Barbara.
"We don't want to be marginalized, [Alzheimer's] or not," says Dennis. After the initial shock of his diagnosis, he says he realized that "life can be beautiful for quite a while."
Neither the cause nor a cure has been found for Alzheimer's, a form of dementia in which memory, language ability and rational thinking decline over time, interfering with the individual's social relationships and ability to function.
People with early Alzheimer's are often able to function well for months and even years longer than those diagnosed in later stages of the disease.
| Leslie Dennis, with early-stage Alzheimer's, volunteers at Garfield Park Conservatory in Chicago. Photo By Sarah Hoskins |
Helping Alzheimer's patients stay active longer has obvious benefits for them, but it can also reduce medical costs as well as the burdens placed on nursing facilities and caregivers.
Experts say that without a cure, an estimated 14 million Americans will have Alzheimer's by 2050, up from 4 million now. The Alzheimer's Association reports that the United States spent more than $50 billion in 2000 on taxpayer-funded Medicare and Medicaid services for people with the disease.
THE PLUSES OF EARLY DIAGNOSIS
New ways of detecting Alzheimer's are among the biggest breakthroughs, since treatment is most effective early on. Until recently scientists thought the only way to be sure of a diagnosis was by examining brain tissue—after the patient had died.
Doctors today believe they can pinpoint early Alzheimer's with standard tests, such as the widely used Mini-Mental State Examination, to evaluate memory and reasoning abilities.
Researchers are also experimenting with imaging scans that can show changes in the brain that are symptomatic of Alzheimer's.
"Early diagnosis is quite critical," says V. Paul Bertrand, M.D., an Illinois neurologist and caregiver for his mother, who has Alzheimer's. Brain cells, he says, are more sensitive to cholinergic drugs in early, mild cases.
Drugs like donepezil (Aricept) boost a chemical in the brain that affects coherent thinking but wanes in Alzheimer's patients. A recent study shows that donepezil delayed the average time between diagnosis and entering a nursing home by 21 months.
The National Institute on Aging is conducting a study on donepezil and vitamin E to learn if they can prevent a condition called mild cognitive impairment from progressing to Alzheimer's.
The primary symptom of mild cognitive impairment is persistent trouble recalling information and events. The condition is more severe than occasionally misplacing keys or forgetting someone's name—but it doesn't encompass the disorientation, confusion and language loss of Alzheimer's.
Scientists estimate more than 80 percent of people with mild cognitive impairment will develop Alzheimer's within 10 years.
Detecting Alzheimer's in the initial stages has other advantages. By understanding lapses in the individual's thinking and behavior, families can take steps to keep the individual safe and functioning as long as possible, says Steven T. DeKosky, M.D., director of the Alzheimer's Disease Research Center at the University of Pittsburgh.
Social worker Yale points out that people in the beginning phases of Alzheimer's are often able to participate in decisions about what kind of treatment they want, where they want to live when they need more care and how they want financial and legal issues and medical decisions handled if they become incapacitated.
STAYING ENGAGED
People with early-stage Alzheimer's need more opportunities—from outings and art projects to volunteering and support groups—to stay involved, says Sam Fazio, director of education services for the Alzheimer's Association.
Yale agrees. "Life doesn't end with the diagnosis," she says. "It's something to be faced, just like anything else in life. This is a trauma, but there's a lot to celebrate in the present."
She says people with early Alzheimer's are able to enjoy time with their children and grandchildren, volunteer, exercise, help fellow patients—in other words, they can be engaged in life.
HELP AT THE START
Sympathetic caregivers can make a big difference for a person with early Alzheimer's. "A lot of things can be done by the caregiver to make things easier," says Bertrand.
Things like laying out clothes to simplify the ritual of what to put on in the morning or keeping a list of channels next to the TV.
Alice Nap, a sales consultant in Joliet, Ill., can tell when her husband—who has early-stage Alzheimer's—is becoming frustrated in an activity. "He wants to do a big project, then he says, 'Maybe I'll start with a small project,' and he doesn't get that done," she explains. The problem for him is following the logical sequence of steps—a sequence in which she can assist.
Barbara Dennis noticed that her husband could no longer write or work on a computer screen; nor could he interpret road signs when he was driving (he decided to stop driving on his own). Barbara could not reverse those losses, but she does support his love of travel by helping him handle trip logistics.
Support groups for people with early-stage Alzheimer's can be very helpful, experts, patients and caregivers agree.
"The disease itself kind of pulls people away from their social life," says Patricia Hunter, family services director for the Western and Central Washington Alzheimer's Association chapter in Seattle.
The support group can become not only a source for socializing but also for information. "What helps people is answering their questions," says Hunter. "We've had couples who've been together for 50 or 60 years. They're used to making decisions together." Finding out what to expect as the disease worsens helps couples prepare in advance.
A support group can also help people deal with issues such as deciding when to stop driving or paying the bills. It can help patients and their families prepare psychologically for the inevitable decline ahead, to deal with anger, depression, anxiety and feelings of isolation and being misunderstood.
Leslie Dennis belongs to a support group, where, he says, "we laugh at our disease and dementia, often with dark humor."
He suggests joining a group of not more than 15 people that meets as long as it's needed. Groups typically are set up to run for eight weeks, but he says "that doesn't do anything. People need to interact with each other and get to know each other."
Robyn Yale says professionals and patients are always on the lookout for ways to keep people with early-stage Alzheimer's engaged in life.
Leslie Dennis has his own ideas. "Simply put, get up and do what you can, or you will fade, fairly quickly."
By doing so, he says, "you remain someone."
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