April 5, 2004 -- When the doctor says "Alzheimer's disease," it's usually the first question patients and family members ask: "How long have we got?"
There's still no way to give a precise answer. But new data paint a much sharper picture of how long a person with Alzheimer's disease will survive -- and how fast the disease will progress.
Memory Problems? Take the Alzheimer's Quiz.
The information comes from a study of 521 Seattle residents aged 60 and older recently diagnosed with Alzheimer's disease. Eric B. Larson, MD, MPH, director of the Center for Health Studies at the Group Health Cooperative, an HMO based in Washington state, led the study.
"Now you can give patients an idea of just how long, on average, they are going to live," Larson tells WebMD. "And you can distinguish those with a worse prognosis from those with a better one."
Earlier studies tended to look at hospitalized patients, who are much farther along in the course of their disease. Larson's team found patients nearly as soon as they received their Alzheimer's disease diagnosis. That makes the findings much more relevant to real life, says Neil Buckholtz, PhD, chief of the National Institute on Aging's dementia branch.
"This study supports what we have been saying for a long time. Alzheimer's survival is highly variable: five to 20 years," Buckholtz tells WebMD. "President Reagan, for example, has survived for quite some time. It is quite variable for individuals."
The findings appear in the April 6 issue of Annals of Internal Medicine.
Planning for the Alzheimer's Future
For Larson, the many issues surrounding the care of a person with Alzheimer's disease are personal as well as professional.
"When I started to see my father declining, it took a long time for my family to get comfortable with that," he says. "The nice thing with this study is that everyone in it was within a year of diagnosis. This was like the real world. Now the family can say, 'This is what is ahead. Let's face it like anything else in life.'"
People with Alzheimer's disease, Larson found, have about half the life expectancy of a same-age person without Alzheimer's. Even so, many people with the disease have lots of life ahead of them.
"A fairly large number of people with Alzheimer's disease are going to live a long time," Larson says. "For example, one in four women diagnosed with Alzheimer's disease will live for 10 more years. That is a lot of years of care to plan for."
The Long and Short of Alzheimer's Survival
Larson's team found that several factors predict Alzheimer's-disease survival:
- Women with Alzheimer's disease live longer than men with Alzheimer's disease.
- Unsteadiness in walking predicts shorter survival.
- Wandering behavior predicts shorter survival.
- Involuntary loss of urine predicts shorter survival.
- A poor score on tests of mental status predicts shorter survival.
- A rapid mental decline in the first year after diagnosis predicts shorter survival.
- Pre-existing heart disease or diabetes predicts shorter survival.
The researchers calculated the average number of years of life remaining to people when first diagnosed with Alzheimer's disease. For each age, this is the number of years after which 50% of people remain alive. Compared with women and men without Alzheimer's disease:
- After age 70, half of U.S. women live 15.7 more years. Half of women with Alzheimer's disease live 8.0 more years.
- After age 75, half of U.S. women live 11.9 more years. Half of women with Alzheimer's disease live 5.8 more years.
- After age 80, half of U.S. women live 8.6 more years. Half of women with Alzheimer's disease live 5.3 more years.
- After age 85, half of U.S. women live 5.9 more years. Half of women with Alzheimer's disease live 3.9 more years.
- After age 90, half of U.S. women live 3.9 more years. Half of women with Alzheimer's disease live 2.1 more years.
- After age 70, half of U.S. men live 12.4 more years. Half of men with Alzheimer's disease live 4.4 more years.
- After age 75, half of U.S. men live 9.3 more years. Half of men with Alzheimer's disease live 4.5 more years.
- After age 80, half of U.S. men live 6.7 more years. Half of men with Alzheimer's disease live 3.6 more years.
- After age 85, half of U.S. men live 4.7 more years. Half of men with Alzheimer's disease live 3.3 more years.
- After age 90, half of U.S. men live 3.2 more years. Half of men with Alzheimer's disease live 2.7 more years.
"Early on, what this means is you don't give up because you have Alzheimer's disease," Larson says. "A person who continues walking each day has less physical and mental decline. So make appropriate plans for safety and security. Keep treating medical problems, and keep your legs strong so you don't prematurely become bedridden or fall down. And consider medications."
While the person with Alzheimer's disease is still lucid -- even if only for limited periods -- it's important to find out his or her wishes.
"Have a discussion of the 'what ifs,'" Larson urges. "If I have pneumonitis, do I want to be taken to the hospital? If I have a heart attack, do I want to be resuscitated? Early on, put in for the type of care the patient wants. If you're going to want home care, make the appropriate relationships early, not when there's an emergency. Or if the person with Alzheimer's disease is going to move from his or her home of many years to a more secure environment, that takes time. You can do this when a person is more or less alert."
Alzheimer's Patients and Caregivers
Kenneth E. Covinsky, MD, MPH, says the new findings will help health care workers understand the need to support people taking care of loved ones with Alzheimer's disease and other dementias. Covinsky is staff physician at the San Francisco Veterans Affairs Medical Center and associate professor of medicine at the University of California, San Francisco. His editorial accompanies the Larson study.
"While life expectancy is reduced, it is also not true that the average Alzheimer's patient is close to death," Covinsky tells WebMD. "There is going to be a fairly lengthy period where there will be important needs to be thought of both for the patient and for the caregiver. We know these needs will persist over a fairly lengthy period of time."
While Alzheimer's disease can't be cured, palliative care can greatly improve quality of life for both patients and caregivers. Providing that care will be a challenge -- not only for individual families, but also for society.
"For older patients, palliative care needs to start well before someone is ready for hospice," Covinsky says. "Part of the issue is recognizing those needs better. But another part is that those services -- caregiver support groups, for example, or home health aid -- are hard to get. This is the kind of stuff not covered by most insurance plans."