Editor’s note: Kenneth S. Kosik, MD, and Ellen Clegg, authors of a recent book on Alzheimer’s Disease prevention and treatment, forcefully propose a new framework and model for brain care: What about setting up “cognitive shops” as “a sort of one-stop shopping for everything from Alzheimer’s disease prevention to guided care for mild or moderate disease”. What follows is the thought-provoking conclusion section from their book “ The Alzheimer’s Solution. How Today’s Care Is Failing Millions and How We Can Do Better ” (reproduced with permission), not very different from the “brain fitness center” model we have talked about in the past.————– Chapter 10. CONCLUSIONS
Just as the idea of hospice care revolutionized death and dying in America, the idea of bundling many aspects of Alzheimer’s
As the baby boomers reach the age when Alzheimer’s can begin to take hold, the committee is right to sound an alarm. The fractious debate about healthcare reform, with the overarching questions about the role of private insurers versus the government, is broad by necessity, and cannot address the changes needed in a fragmented system of care for long-term diseases like Alzheimer’s.
Physicians are boxed in by an insurance system that pays them a fee for every service rendered, yet does not pay for time spent with a patient’s family outlining a plan for diet, ﬁtness, and social services like respite care. Patients and families ﬁnd themselves pasting together a complicated network of care on their own, getting referrals to community social service agencies, transportation services, adult daycare, overnight care, and support groups. Accompanying a partner or a spouse with Alzheimer’s to appointment after appointment is hard on elders; the situation can be even more nightmarish for the spouse of a patient with early onset Alzheimer’s. Although early onset is a much rarer form of Alzheimer’s, it poses unique burdens: the patient’s spouse may still be working outside the home and tending to school-age children.
In short, Alzheimer’s disease has been wedged into a medical system that has no place for it. Patients and their families can easily get lost in a labyrinthine empire, built up over years as healthcare became more costly and more regimented, and as science struggled to move beyond outdated ideas.
The hospice movement involved recalibrating the care of patients at the end of their lives, putting their needs ﬁrst. It meant viewing care as a whole, not just a sum of tests, procedures, tubes, and bedside monitors. It meant a new emphasis on pain relief and humanity, while providing families the opportunity for relief from round-the-clock care of a dying loved one. Before hospice, death of a loved one often took place in a stark hospital room, amid a tangle of beeping electronic gear and tubes delivering medicine that was no longer effective. Family members wedged in visits, and nurses and doctors often bustled in and out, administering procedures that did little to alter the overall prognosis. After hospice care became accepted in the mainstream of medicine, the individuality of patients and families was taken into consideration— their wishes, their fears, their emotions. Measures of comfort, often delivered by professionals who were not doctors, became important.
Community-based cognitive centers could usher in similar changes in Alzheimer’s care—with an important difference. A cognitive center would not be a place to go to die, but a place to ﬁnd support and information. Based in a patient’s neighborhood, not in an imposing academic hospital in a big city, the cognitive shop would offer a sort of one-stop shopping for everything from Alzheimer’s disease prevention to guided care for mild or moderate disease.
Think about the dentist’s ofﬁce as an analogy: dental ofﬁces are found all over, not just in hospitals, and provide a fairly complete menu of care without the need for expensive specialists. When necessary, a dentist refers a patient to an endodontist or another specialist, but she generally treats most conditions in the ofﬁce—and dentists and other staff, like hygienists, deliver preventive care in the same setting.
The cognitive shop would provide support for physicians, too, by reducing the focus and the burden on a single doctor. A wide array of questions from families and patients could be answered by a social services worker or by a patient Navigator, who would guide them to existing points of information. Families would be shown how to ﬁnd support groups or tap into computerized information right there at the center. Patients would not have to shuttle across town after diagnosis to an expensive specialist like a neurologist, and then make additional appointments for therapy, for example. Spouses could get a needed break so they could go to work or shop or visit friends—generally refreshing their own support network.
There is another parallel to the hospice movement in the low-tech solutions that could be housed in the cognitive shop. The staff could also provide low-tech tests for people who wondered if they were beginning to slide into dementia—a service that could help cut down on expensive tests like MRI scans for people complaining of memory loss. A nurse or a physician’s assistant could take histories and information’s from patients, administer memory tests, take blood pressure and other samples if needed, and provide information about social services. Medical doctors could be brought in only when needed, shifting some of the burden from the overworked physician—an important shift given the shortage of primary-care doctors.
What will the cognitive shop look like? Consider this hypothetical scenario:
A retired businessman and his spouse have led a comfortable life for a number of years in an adult community in the suburbs of a larger city. They have both noticed that he has begun forgetting words, and both became alarmed when he was found wandering in the parking garage of his building.He had forgotten what ﬂoor his apartment was on and could not ﬁnd his way back. His wife urged him to go to their primary-care physician for an appointment, and she accompanied him. When they arrived in the doctor’s ofﬁce, the doctor listened to his patient’s concerns and gave them a referral to a cognitive clinic near their home. There, he told them, the husband could take a memory test and get more information.
The clinic, small but well designed, is actually tucked away on a neighborhood side street off a busier highway. The couple is welcomed by a receptionist sitting behind a wooden desk. A vase of fresh ﬂowers, colorful framed prints on the wall, and overstuffed wing chairs add to the welcoming feel. After a short wait, the husband and wife are ushered into an examination room. Its layout is typical: desk, chair, and examination table. But sunlight streams through the venetian blinds that slant against a window, and there is a curtain that can be drawn around the table, for privacy. A physician who is comfortable with memory disorders—perhaps a neurologist or a geriatrician, or an internist—introduces herself to her new patient and to his wife, and sits down to listen. The silver-haired husband and his wife, who still carries herself like the varsity tennis player she was in college, seem alert and engaged, if worried. The doctor is engaged, as well. She knows that she has more time to devote to hearing this couple’s story than a ﬁfteen-minute ofﬁce visit would allow.
Although the physician has been trained in the classical medical model, where advice on disease prevention and healthy lifestyles fall outside her purview, she has moved beyond the conﬁnes of that limiting standard. She knows that many elderly people have more than one medical condition, a history that a doctor with a two-thousand– patient workload would not be able to probe—no matter what sort of health services she wanted to provide. As she jots down notes about the patient and his complaint about memory loss, she slips in questions about current events. The conversation ﬂows naturally, but it is in fact a guided conversation designed to assess the patient’s memory. The doctor asks about family history, social history, and then makes inquiries about organ systems—heart, lungs, stomach, gut, urinary tract. The patient recalls quite a bit about his medical history, but he struggles once or twice to ﬁnd the right word. His wife, a bit anxious, rushes to ﬁll in the gap.
When the history is complete, the neurologist asks the patient to don a cotton gown, and she leaves the room for a bit to give the couple some privacy. When the doctor returns, she does a physical examination and selects a set of tests to order from the lab: she asks for samples of blood and urine, but decides no x-rays or MRIs or other scans are needed at this point. A neuropsychologist comes in, greets the couple by name, and leads them to an adjoining room, where the man will be given a more formal memory test and a social worker will join them to come up with an immediate plan for action.
That plan will recommend medications currently on the market, which may give a small boost, and nonpharmaceutical interventions. In a more traditional setting, many of these treatments would fall outside the bounds of the current medical model. But in the cognitive shop, all reasonable and safe interventions are discussed and considered by the staff, including dietary adjustments, supplements, lifestyle adjustments, exercise programs, games and puzzles, and other methods used to challenge the brain. But the person who discusses these interventions is not the physician. The cognitive shop has a Navigator, a position that may seem unfamiliar because it is so new. The Navigator works in a room with a comfortable leather couch, and a large ﬂat screen on one wall. She offers the couple a cup of green tea, and then turns on a laptop computer designed to project a simple Google search page on the screen. She does not know everything, of course, but she is not expected to. With the Internet as her aid, all information about memory loss and Alzheimer’s disease is available. Her skill is as a human search engine.
The retired businessman and his wife have scores of questions for the Navigator: Is there a support group for spouses nearby? How can I get help cleaning the house? Is there a grocer who delivers? If we change our diets, will it stave off dementia? What about driving? Do our children have some genetic risk of developing the same problem? Are there any clinical trial programs available? What, if anything, should we tell our friends? Our grandchildren? The Navigator clicks on certain Web sites that are chock-full of useful information, on everything from diet to political activism on Alzheimer’s disease. The Navigator prints out a packet that is especially tailored for the husband and wife, and has information they can give to their adult children on what to expect, and what help might be needed down the road. Finally, the Navigator enrolls them in an online site that coordinates volunteer “helpers” in their community, and walks them through a form they may need in the future to ﬁle an insurance claim for a home health aide. She asks if there is anything else they need; grateful, but slightly overwhelmed, the couple takes the sheaf of information and schedules a series of follow-up appointments. Although the follow-up visits are not with the neurologist, the couple believes they are in good hands with the cognitive shop staff, and knows that a doctor will oversee any medical needs that might arise.
Too good to be true? Not really. Given the fact that Alzheimer’s disease is already the nation’s third most expensive disease, costing the government more than $100 billion per year, there is every reason to be open to experimentation with new ways of delivering care.2 And care that involves the entire family, in an easily accessible neighborhood setting, makes sense for a disease that is, at its essence, a family disease. In 2009, the Alzheimer Study Group estimates, 10 million caregivers will provide 94 billion hours of physically demanding, emotionally draining, uncompensated care.3 Although the cognitive shop may seem ﬁnancially out of reach, when weighed against current practice, it is more likely to reduce medical costs. The cognitive shop distributes high-quality care to the community rather than concentrating such care at centralized tertiary-care centers, it reduces physician contact time by having a staff on site that are geared to cognitive health issues, it may delay entry to assisted living facilities and prevent visits to the emergency room, it consolidates care around a major problem that is now handled by a highly fragmented system, it addresses the needs and questions of families, and it adds value to the practices of local primary-care physicians. Because not all of the services available in the cognitive shop are reimbursed by public and private health insurance, the cognitive shop uses a network approach to funding: some money comes from private philanthropy, some from grants, and some from insurance. In addition, the shop works with partner organizations in the neighborhood—a university health club, a local dieticians’ group, a yoga instructor, and a local com– puter guru who is an expert in setting up online social networking sites—to supply a network of low-cost services.
Patient-centered movements have pushed the medical establishment before. The hospice movement, as we have noted, restored a level of humanity to the wrenching process of death and dying. Breast cancer patients, a traditionally well-organized, vocal group, demanded alternative treatments to the disﬁguring radical mastectomy in the 1970s, and new research blossomed that changed standards. AIDS patients and caregivers adopted tactics from the civil rights movement of the 1960s to bring public attention to the rise of the human immunodeﬁciency virus (HIV) in the early 1980s. New experiments in delivering primary medical care, such as the “medical house” movement that gathers care together in one setting, offer a pathway toward healthcare reform.
Although many details remain to be worked out, the cognitive shop offers a similar sort of new paradigm for Alzheimer’s disease care and, more important, Alzheimer’s disease prevention. It draws together, under one roof, three key steps in a multi-pronged assault on the many cumulative insults that eventually lead to Alzheimer’s disease. Each step involves a care team with physicians and lay experts working in concert to keep the needs of patients and families at the forefront:
Step One: Prevention. We now have good evidence for a set of preventive measures, including diet, exercise, and cognitive stimulation, that can be undertaken. If adopted, these interventions can delay the onset of the disease.
Step Two: Early detection. It is essential to detect Alzheimer’s dis– ease in the brain before a person becomes impaired. This means using the tools of genomic medicine and twenty-ﬁrst-century medicine: genetic predictions, biomarker testing, brain imaging, and baseline neuropsychological testing.
Step Three: A personalized approach to a program of early intervention that helps patients, families, and caregivers navigate the thicket of information on the Internet, and make sense of products on the market.
These steps, taken together, will help patients, families, caregivers, and doctors with the burden of an impending demographic explosion in Alzheimer’s cases—and establish a culture of guided experimentation that can only inform the twenty-ﬁrst-century debate about how to deliver healthcare.
To Learn More and Order Book: click The Alzheimer’s Solution: How Today’s Care Is Failing Millions– and How We Can Do Better , by Kenneth S. Kosik, MD, and Ellen Clegg
1. “A National Alzheimer’s Strategic Plan: The Report of the Alzheimer’s
Study Group,” p. 5, http://www.alzstudygroup.org (accessed August 8, 2009).
2. Ibid, p. 4.