Brain power
The medical profession predicts that when baby boomers attain the age of 85, Alzheimer disease (AD) will likely reach epidemic proportions. Based on current conditions, one-third to one-half of those who reach age 85 are likely to develop AD. Immediate intervention is essential to push back AD’s debilitating components as late as possible, allowing those who are at risk of the disease to have quality of life as long as possible.
“Longevity has its drawbacks” is a droll understatement by Hugh C. Hendrie, M.B., Ch.B. The brain, like all other parts of the human body, ages and sometimes breaks down. “It’s very complex, but the pathway seems to be clear that everyone can be proactive to slow down the effects.”
Hendrie, as the major researcher in an on-going, international study with populations of elderly African-Americans living in Indianapolis and elderly Yoruba in Ibadan, Nigeria, has been at the forefront of determining what, if any, impact lifestyle choices and environment may have on dementia and AD.
Several dozen other researchers and health care professionals at IU School of Medicine are focused on a span of other research projects, including a joint effort with the National Institute of Aging and Alzheimer Disease Centers nationwide. Just 10 years ago, very little was known about AD. Now, driven by a belief that intervention is possible, the intent is to override the existing culture of crisis management.
Mary Guerriero Austrom, Ph.D., director of the Education Core at the Indiana Alzheimer Disease Center, IU School of Medicine in Indianapolis, emphasizes the importance of the population as a whole being informed, aware and hopeful. She cites the recent PBS airings of The Forgetting: A Portrait of Alzheimer’s, followed by nearly two hours of telephone calls. Members of the IU School of Medicine were on hand at WFYI to address each question off the air.
New research is showing that individuals can, early in their lives, choose a lifestyle to avoid known risk factors leading to AD. Being proactive to maintain habits leading to good physical and mental health is a choice people must be willing to make.
David Orentlicher, M.D., J.D., served his first term in the Indiana General Assembly in 2003. He isn’t the only medical doctor elected to Indiana government. Orentlicher, however, is part of a cutting-edge aspect of medicine. He is Samuel Rosen Professor of Law and co-director of the William S. and Christine S. Hall Center for Law and Health, at 530 W. New York St.
Orentlicher says health care is 15 percent of the gross national product. When a considerable part of our economic concerns are tied to preventing illness, maintaining good health and curing disease, politics becomes a given. And, a growing body of laws requires interpretation of them and legal documents to ensure acting within them.
Health insurance, Medicare, Medicaid, living wills, right-to-die are hot topics. Bio-ethical issues are garnering unexpected new advocates, such as Nancy Reagan, now supporting stem cell research in the wake of her husband’s Alzheimer disease.
Legal Medicine is the professional and academic discipline that concerns itself with legal aspects of medical science, medical practices and other health care delivery problems. The American Health Lawyers Association currently has over 9,000 active members practicing in law firms, government, private practice and academia.
As the population ages, legal concerns shift to something as seemingly simple as maintenance of dignity, affordability and the consequences of an elected official’s religious beliefs dictating research and medical practices.
Orentlicher talked to NUVO between phone calls at his IUPUI office, during a lunch break from the recent legislative session. By way of illustrating the breadth of issues, he described some of his recently published research papers on medical practices that become legal concerns: “The Rise and Fall of Managed Care: A Predictable Tragic Choices Phenomenon,” “Universality and Its Limits: When Research Ethics Can Reflect Local Circumstances,” “Conflicts of Interest and the Constitution.”
Addressing the realities, Orentlicher explains, “Medical costs are high because people didn’t like managed care, and that change costs money.” Yet, long-term health care is becoming the most pressing issue and needs to be addressed when individuals are still healthy.
“Alzheimer disease patients can’t speak for themselves. It’s an area that gets neglected. That population will grow, making it a critical concern.”
Medicaid and Medicare are not sufficient. Families need financial planning. They need legal agreement on limits and kinds of health care. Orentlicher explains, “People feel, ‘I want to have control,’ but only in Oregon can a patient have physician assisted suicide. What we are really seeing in Oregon, versus original fears, is that the rate of suicide there is low based on five years of data. Having the prescription doesn’t mean it’s used. It relieves the stress of not having control and allows people to face death with dignity.”
As demographics shift, the National Academy of Elder Law Attorneys is gaining members as a growing specialty. Because federal and Indiana laws on health care, public benefits and insurance are complicated, it’s best to get expert advice before buying insurance or filling in documents. Forms for wills or health directives pulled off the Internet may not hold up.
—RK
A study, involving individuals 75 and older, published in the June 2003 issue of the New England Journal of Medicine, was cited by Daniel Rexroth, Psy.D., visiting assistant clinical professor. “The number of times a participant [in the study] engaged in cognitive activities each week was found to be related to their risk of getting dementia five years later.”
In his article appearing in the most recent issue of the Indiana Alzheimer Disease Center newsletter, Rexroth states, “Reading, playing board games and playing musical instruments were generally found to be associated with a lowered risk of dementia.”
Martin R. Farlow, M.D., professor of neurology and vice chairman for research, IU School of Medicine, underscores early detection as another important factor in slowing AD. He explains that while there currently are no medications to delay or stop the progression of the disease for individuals predisposed to it, there are medications that help with symptoms. Taking these medications in the earliest stages can enhance quality of life despite the disease’s inevitable progression toward the brain’s loss of function and memory.
At this crucial point, it’s the 20-, 30-, 40-somethings who have the ability to decrease their risk of AD, and who have to prepare for being caregivers of partners and parents.
AD is one of a group of illnesses known as the dementing disorders, or dementia. Dementia refers to a group of signs and symptoms, usually called a syndrome. As the brain ages, some neurons important to complex mental activities such as learning, memory and planning shrink. That’s an inconvenience.
It’s when the three processes essential to keeping neurons healthy are disrupted that real trouble starts. Simply put, neurons are supposed to receive messages and activate the brain to carry out commands to do something, and neurons are supposed to continue to repair themselves and keep growing, like any other part of the human body.
“The brains of AD patients have an abundance of two abnormal structures,” explains Ann Marie Hake, M.D., clinical assistant professor of neurology and psychology. Plaques gum up around the neurons so they can’t receive messages, while tangles derail transporting messages. Plaques and tangles go beyond slowing down mental processes to stopping them altogether. The brain looks like what you’d “image” as the barricade and thicket encasing Sleeping Beauty. In its final stages, AD is impenetrable, with no gallant savior-prince in sight.
When messages and commands cease in the parts of the brain associated with thinking and making decisions, memory is wiped out. In its early stages, the AD patient is aware of blank spots. As AD progresses, even awareness disappears and body functions ever so slowly begin to shut down. The AD patient is alive, yet void of his/her unique personality. Social and communication skills are gone.
How do I know if something is amiss and what do I do about it?
The National Institute on Aging publication, Alzheimer’s Disease: Unraveling the Mystery, provides a clear, graphic analysis of the usual progression. (Available at 1-800-438-4380.)
Memory loss, clinically called mild cognitive impairment (MCI), is often an initial, transitional phase between normal brain aging and AD. It’s at this point, if you haven’t done so already, that action must be taken to ensure desired medical, financial and legal assistance before the disease progresses, Hake says.
First step, go to a neurologist. Take a friend or family member to help you listen, ask questions and voice your fears and concerns. Take notes or record the conversation. Take time to understand what is happening. Fathoming a time when you cannot remember your past or envision your future is frightening. It’s equally numbing for family members.
Absorbing a diagnosis, overcoming denial, gathering the family together to mend fences, to agree on who will be responsible for what — and no arguing, recriminations and guilt, thank you — are the “dream” steps to rational care-giving. Often, it takes professional intervention to get to the point of an orderly and loving plan where everyone shares responsibility and decision-making and stays bonded and physically and emotionally healthy despite the drain on emotional, physical and financial resources and reserves.
Yes. As the disease progresses, there are incidents of getting lost. It takes longer to do normal daily tasks. Handling money and paying bills becomes difficult. Poor judgment leads to bad decisions. Spontaneity and sense of initiative are lost. Mood and personality changes may include increased anxiety.
Decisions about driving are often the first real breach between who you are and what you are becoming. Loss of independence is pretty awful. Yet, there is much that friends and family members can do to enrich even these dire circumstances. The Indiana Alzheimer Disease Center at IU School of Medicine provides resources for the asking. Call 274-4939.
Following this mild stage, damage to the cerebral cortex spreads, causing more behavior problems, which usually necessitates closer supervision. The symptoms of moderate AD can include:
• Increasing memory loss and confusion
• Shortened attention span
• Problems recognizing friends and family members
• Difficulty with language; problems with reading, writing, working with numbers
• Difficulty organizing thoughts and thinking logically
• Inability to learn new things or to cope with new or unexpected situations
• Restlessness, agitation, anxiety, tearfulness, wandering — especially in the late afternoon or at night
• Repetitive statements or movement, occasional muscle twitches
• Hallucinations, delusions, suspiciousness or paranoia, irritability
• Loss of impulse control (manifesting in sloppy table manners, undressing at inappropriate times or places or vulgar language)
• Perceptual-motor problems
Severe AD is the last stage. All sense of self vanishes. “Death comes as release from years of being a prisoner in your own body,” commented a widow. “I watched him die, disappear actually, mentally day by day until his body finally succumbed.”
Yes. “Contrary to popular beliefs, dementia is not a normal part of aging,” Hendrie and Austrom state. “Many people live well into their 80s, 90s and beyond without any sign of dementia. Unfortunately, many people believe that as age increases, brain function inevitably decreases. As a result, many individuals will not seek medical attention for themselves or an older relative at the first sign of a problem.”
“The problem [forgetfulness, disorientation, personality change] actually could be caused by a treatable disease, such as hypertension or heart disease, or perhaps blood sugar or thyroid dysfunction,” Farlow explains. Left untreated, something easily contained escalates. “Do not self-diagnose, self-medicate or go into denial,” he adds.
Recent research has been showing risk factors described for AD are similar to, or the same as, those for heart disease and stroke. “Vascular risk factors are controllable,” Farlow points out. A life-long habit of physical and mental exercise and good diet are at the top of the to-do list. The earlier one starts, the better. Being overweight, smoking and a sedentary lifestyle are markers for real problems in aging.
“Hypertension is controllable and treatable,” Farlow emphasizes.
According to recent research, hypertension may increase the risk of AD. It is believed both can be stalled by lifestyle changes, including medications and a mix of vitamins and, yes, a glass or two of wine with a meal. Reading, engaging in stimulating conversation, doing puzzles, laughing, being curious stimulate the mind. The brain fits the adage “Use it or lose it.”
Research analysis shows that watching television as the prime activity, at any age, is detrimental to brain and body. So is a steady diet of foods that fail to deliver what the brain and body need to function at peak performance, including repairing itself.
Austrom invites requests for information on how you can become proactive. Call 274-4939 or e-mail maustrom@iupui.edu.
Also contributing to data in this article are Jill Murrell, Ph.D., assistant professor of pathology; Judith Caress, RN, BSN, clinical research coordinator; Martha Mendez, RN, MSN, clinical research coordinator; Michele Goodman and Valerie Parks at the National Cell Repository for Alzheimer Disease, housed at the IU School of Medicine as a joint effort with the National Institute of Aging and Alzheimer Disease Centers nationwide.
• Alzheimer’s Association of Greater Indiana offers support groups, services and information for patients, family members: 575-9620.
• Indiana Alzheimer Disease Center, an NIA-funded center that diagnoses and carefully characterizes patients with AD and follows them through the entire course of the disease, carries out basic and clinical research, helps family members provide care, publishes a newsletter with research updates and practical assistance; AD patients also can participate in clinical drug trials which often lead to the approval of new drugs for AD: 278-5500.
• I-CARE About AD Project provides education and training to underserved areas; offers programs for caregivers and AD patients; disseminates information to libraries, agencies, individuals; places books on AD in every Indiana public library: 274-4939.
• National Cell Repository on AD collects genetic information on AD from all over the country to support and encourage research on AD: 1-800-526-2839 or 274-7360.
• State of Indiana Governor’s Task force on Alzheimer’s Disease provides funding for research, care; initiates legislation.
• Alzheimer’s Disease Education and Referral Center, National Institute on Aging, publications available upon request, including “At the Crossroads: A Guide to Alzheimer’s Disease, Dementia & Driving,” a workbook to chart observations; “Alzheimer’s Disease: Unraveling the Mystery,” a comprehensive overview, with a compact disk to extend data beyond the printed word; and much more on their Web site: www.alzheimers.org or e-mail adear@alzheimers.org or call 1-800-438-4380.
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