“I fear Alzheimer’s disease more than I fear cancer,” says one middle-aged Springfield woman. Alzheimer’s robs us of our minds, of what makes us who we are—our intellects, personalities, thoughts and memories.
An estimated 210,000 people in Illinois have Alzheimer’s disease today, and that number is increasing steadily as baby boomers age. Since 1987, the Center for Alzheimer’s Disease and Related Disorders (CADRD) at SIU School of Medicine in Springfield has diagnosed, treated and educated Illinois residents with Alzheimer’s and other dementia-related problems. In 2010, the center, along with its Memory and Aging Network, served more than 2,400 patients and families.
The center, born out of 1986 legislation, is one of three regional Alzheimer’s disease assistance centers in the state. Rush University Medical Center and Northwestern University serve the Chicago area. CADRD serves the rest of the state — 93 of the 102 counties in Illinois.
In keeping with the School’s mission, CADRD has four functions, according to Tom Ala, M.D., interim director of CADRD and associate professor of clinical neurology. “We evaluate and treat patients in our clinic; we do research; we provide education for both the public and health care providers in Springfield and throughout the state; and we have the Memory and Aging Network for evaluations, treatment and recommendations.
“We’re able to do all of this because we have received consistent annual funding from the Illinois legislature. We are entirely supported by the State of Illinois.”
Some memory concerns may be natural, age-related memory loss. Other symptoms may be caused by medical conditions such as depression, thyroid deficiency or a medication interaction that are reversible with proper treatment. About 10 percent of people who come to the Clinic have a reversible condition.
Severe memory disorders may be dementia, meaning the patient has cognitive impairment in multiple areas, such as communication and doing complicated tasks, as well as memory. Alzheimer’s disease is the most common type of dementia.
Alzheimer’s disease usually, but not always, affects an older person, causes confusion and gets worse over time, eventually causing complete loss of intellectual function. The disease is progressive and degenerative. Alzheimer’s goes through three general stages — mild, moderate and severe — and progresses at different rates in different patients. In some cases, the progression can be quite slow. “We have seen many patients 10 years later who do about the same on our screening tests as when they first came to the center,” says Dr. Ala.
In 90 percent of cases, Alzheimer’s presents as early impairment in new learning and memory, although in a small minority it may present with other symptoms, such as early language or visual-spatial impairment or a personality change.
The biggest risk factor for Alzheimer’s disease is age. After a person reaches 65 the risk of getting Alzheimer’s doubles every five years.
Genetics also raises the risk of Alzheimer’s. However, says Dr. Ala, “In the usual situation of an older person in their 70s or 80s who is becoming forgetful and confused, it’s very difficult to gauge if there is a genetic influence. These cases are rarely clear-cut. One of the leading theories is that in older patients, it’s not just one gene doing something. There are multiple genes involved that increase the risk of Alzheimer’s, and that’s why there may be some genetic influence.
“In a younger person, it’s a very different case. There are patients in their 30s, 40s or 50s who have this condition appearing in their families generation after generation. With early-onset Alzheimer’s, usually there is a family history of the disease.” However, “On the positive side,“ continues Ala, “early-onset Alzheimer’s disease genetic cases are relatively rare. In my 20-some years of seeing patients, I’ve seen fewer than 10, maybe five. Right now in the clinic I’m aware of only one early-onset family that is seeing me.”
Another risk factor that researchers are looking into is a link between Alzheimer’s and the metabolic syndrome, a combination of conditions related to obesity that includes high blood pressure, unhealthy cholesterol levels, elevated insulin levels and excess body fat around the waist.
Memory and Aging Clinic
The Memory and Aging Clinic at SIU School of Medicine in Springfield is the hub of CADRD. It provides memory and cognitive assessments, treatment, education, and referral and counseling services to patients and their families.
The clinic is staffed by a close-knit group of professionals, many of whom have worked together for 20-30 years. The group includes Dr. Ala; Rodger Elble, M.D., Ph.D., professor of neurology, who works with Parkinson patients; two nurse practitioners; a social worker and clinical gerontology specialist; a neuropsychologist; two psychometrists; and a clinical trials coordinator, as well as other researchers and staff members.
Patients come to the Memory and Aging Clinic with a variety of symptoms. “It might be a 60-year-old who’s always been active saying ‘my memory is failing me’ or it may be that the family is bringing in grandpa who is really confused, or it may be a medical/legal issue,” says Dr. Ala.
However, not everyone comes in with memory symptoms. “Some people come in with word finding problems, personality changes, behavioral problems, getting lost, goofing up work. Patients can present with many different symptoms,” says Dr. Ala. Cognitive screening tests help to sort these issues out.
Patients undergo a comprehensive exam, including family history. Next are screening tests to test the memory. Blood tests, a brain scan and neuropsychological testing also may be done to help assess the patient.
Many patients who come to the center are given neuropsychological tests — two- to three-hour or longer standardized neurocognitive tests given under the direction of the center’s neuropsychologist, Ron Zec, Ph.D., associate professor of neurology and psychiatry, with the help of two psychometrists, who specialize in administering psychological tests. They give patients formal standardized memory tests and assess attention spans as well as various aspects of language, visual/spatial functioning, problem-solving ability and psychomotor performance. They also use a rating scale to rank depression and anxiety.
Testing may include as many as three different word list memory tests, one story memory test and one visual memory test. “We used to think being normal on two tests and bad on one meant the bad one was a fluke. We’ve learned that being abnormal on just one test probably means that something is wrong and may be an indication of problems down the road,” says Dr. Zec.
After all test results have been evaluated, the center makes recommendations whether there is no problem or the condition is treatable or if the patient does suffer from a type of dementing illness, including a diagnosis of Alzheimer’s.
Medications can help treat the symptoms of Alzheimer’s in some patients for a time, but despite years of research, no one has been able to develop a “magic pill” to cure it or stabilize symptoms. “The lesson of the past 20 years is that nothing works very well,” says Dr. Ala. “Some medications can help treat the symptoms of Alzheimer’s, such as depression, anxiety, agitation, memory loss, and sleep disorders, but nothing cures it or slows the long-term progression. The memory will continue to slip over time.”
Aside from medications, the center recommends a variety of therapies to ease the symptoms for patients and to support families and caregivers. Some adult day care centers offer programs specifically for people with memory loss.
Therapies that provide cognitive stimulation, social engagement and physical activity have been found to be most helpful. Creative therapies such as art programs and improvisation groups keep the brain active. Tai chi and other forms of physical movement can be helpful as well as enjoyable, especially with early-stage Alzheimer’s patients. Simply enjoying nature can be therapeutic.
For many Alzheimer’s patients, the written word is more easily understood than the spoken word. Researchers have discovered that techniques like communicating with words written on cards can be more effective than speaking, especially for patients in the later stages of the disease.
“In mild cases, the person we’re helping the most is the patient, but for advanced cases, caregivers need help, too,” says Dr. Ala. The Memory and Aging Clinic gives that attention to caregivers and families of Alzheimer’s patients.
A memory loss support group for early-stage Alzheimer’s patients and caregivers meets offsite in Springfield. The seven couples in the current group first meet together and then split into two, giving each group a chance to talk about the specific issues they face.
One issue patients talk about is the stigma too often associated with Alzheimer’s disease. “If I have cancer, I’m not afraid to tell people,” they sometimes say, “but Alzheimer’s is different.” That attitude needs to change, says Greg Kyrouac, director of education and outreach programs for the center. Alzheimer’s patients are encouraged to let their families and others know they have the disease.
In the support group, caregivers learn techniques to better deal with situations that may arise. “Sometimes caregivers make things worse by what they do,” says Kyrouac, describing a support group session in which a patient talked about his frustration when he needs to ask a question for a second or third time. “When I talk to my wife, and she tells me she’s already told me something, that makes me frustrated and mad. Sometimes I don’t say anything because I don’t want to start an argument.”
Kyrouac continues, “Caregivers need to learn to adapt.” It’s best to not argue with an Alzheimer’s patient and instead perhaps ask questions. For example, if someone keeps asking if today is Sunday, ask what he likes to do on Sunday or find out why Sunday is important to him. Caregivers in the support group also learn that they need their own support systems, as well as time for themselves.
Memory and Aging Network
CADRD’s services are available not just in Springfield but throughout 93 counties—by far the largest geographic area served by any of the centers. The network has grown to 36 sites — from Rockford and Freeport in the northern part of the state to Carbondale and Golconda in the southern part. They range from clinics and hospitals to adult day care centers. In 2010, the network providers helped more than 1,300 patients.
Each site provides unique services. “Some use nurses, some use social workers, some use physician’s assistants, nurse practitioners, psychologists, psychiatrists, or neurologists. Some work more closely with community physicians,” says Kyrouac.
Services available may include counseling, referrals and education. All sites provide assessments using the same 24-page assessment form. Kyrouac says, “In order to do a good dementia assessment, you need to get a good history. The assessment also helps providers understand the family situation and caregivers.”
Staff at the Springfield Memory and Aging Clinic support network members by providing educational programs and training sessions. CADRD also provides grants to the sites to support community education activities.
Educational efforts are a vital part of CADRD and its Memory and Aging Network. Together they sponsor more than 500 education presentations, training workshops and conferences each year, including two annual meetings. More than 15,000 community members and Alzheimer’s professionals attended CADRD programs in 2010.
One of the most popular events is the prevention conference held each spring. Experts from all over the country offer information on Alzheimer’s risk and protective factors and strategies for early intervention.
The autumn memory loss conference educates both the public and Alzheimer’s professionals over two days. One day is devoted to people with memory loss, family members and the general public while the second day is geared to professionals in the fields of care giving, health care and aging. This year’s conference, held November 7-8, is the 16th year of the event.
We don’t yet know what causes Alzheimer’s or how to stop or cure it, but researchers do know a lot about what goes on in the brains of people who have Alzheimer’s disease.
One of the most important things researchers have learned in recent years is that Alzheimer’s disease starts developing 10 or perhaps even 20 to 30 years before a person shows any symptoms. By that time, there’s already significant microscopic damage to the brain, especially in the medial temporal lobes, which control memory formation. One thrust of research now is to identify patients 10 to 20 years in advance, when treatment might make a big difference in changing the course of Alzheimer’s.
To better understand how Alzheimer’s and other types of dementia develop, researchers at SIU School of Medicine are doing basic research using transgenic mice — mice genetically modified with genes from people who have family members with Alzheimer’s. Gregory Brewer, Ph.D., professor in the Department of Medical Microbiology, Immunology and Cell Biology, is studying whether the sedentary behavior associated with old age triggers changes in the brain that are associated with Alzheimer’s. Robert Struble, Ph.D., research associate professor at CADRD, also is doing research in the relationship between Alzheimer’s and the decline of metabolic activity in the brain. (See aspects 33-2).
Researchers now know that protein fragments called beta-amyloid clump together and form plaques in the spaces between nerve cells in the brain and that twisted strands called tangles, made up of another protein called tau, build up inside cells.
Dr. Ala explains, “One of the theories is that these pathological changes — plaques and tangles — are really a byproduct of Alzheimer’s — not the cause, but the result.” This is supported by the finding that the brains of older adults who function normally sometimes contain the same plaques and tangles seen in Alzheimer’s patients.
Researchers at the School’s Center for Integrated Research in Cognitive and Neural Sciences in Carbondale are studying beta-amyloid and other aspects of the regulation of brain metabolism (see “Sugar, Fatty Acids, and the Aging Brain,” ).
In the last 20 years, pharmaceutical companies have channeled billions of dollars into the development of drugs for Alzheimer’s with modest success. CADRD is participating in several clinical drug trials. “We are involved in a major study in the world right now of a drug called bapineuzumab,” Dr. Ala says. “Two different pharmaceutical companies are looking at it. The hope is that it slows Alzheimer’s by interfering with the amyloid process. We’re one of 200-some centers investigating bapineuzumab.” The researchers have been following more than 20 patients for more than a year as part of a double-blind placebo-controlled study.
Another long-term study led by Dr. Zec is looking at normal and abnormal cognitive aging. The study is cross-sectional as well as longitudinal, involving several hundred people — both with and without Alzheimer’s disease. The data is providing Dr. Zec with accurate local norms, which will help clinicians determine when a patient is impaired.
Dr. Zec has become a big believer in “what’s heart healthy is brain healthy” and “use it or lose it” in terms of cognitive function.
“There’s plenty of evidence that cognitive activity helps,” he says. From his research, Dr. Zec has come to believe that building up the brain’s “reserves” is important in preventing the symptoms of Alzheimer’s disease. He emphasizes that what may be important is not how many brain cells you lose but how many you have left.
For example, Dr. Zec says, people who speak a second language are less likely to develop Alzheimer’s. “Having to go back and forth between two languages is a brain exercise like doing mental gymnastics.”
He has found that the people who are least likely to show symptoms of Alzheimer’s are intellectually curious, socially engaged and physically active. They do things in moderation and are able to handle the challenges life deals them with wisdom and grace.
His prescription for preventing or slowing down Alzheimer’s disease is to follow the same heart-healthy guidelines suggested by the American Heart Association on diet and exercise combined with activities that improve cognitive function. “Even if you’re not concerned about Alzheimer’s or heart disease, these practices make you look better, feel better and function better in the here and now. Who wouldn’t be interested in that?”
The quest to better understand Alzheimer’s — what causes it, when it begins, how to treat it, and how to help people who are afflicted by it — continues. One thing is certain: the Center for Alzheimer’s Disease and Related Disorders will be here to help patients and their caregivers and to teach us about the disease.