Peter J. Whitehouse, MD, MA, PhD, and Daniel George, MSc, have written The Myth of Alzheimer's: What You Aren't Told About Today's Most Dreaded Diagnosis.

This is a Geriatrics interview with Dr. Whitehouse, a professor of neurology and former professor of cognitive science, psychiatry, neuroscience, psychology, nursing, organizational behavior, bioethics and history at Case Western Reserve University in Cleveland, and Mr. George, a graduate student at Oxford University in the United Kingdom who is pursuing his doctorate in medical anthropology.

Dr. Whitehouse

Mr. George

Q: Why did you write this book?

PW: Over the past 25 years, I have seen this story unfold in the fields of practice and research. We need a new model of thought on dementia. The current model is too constraining for patients, science, and society.

Q: What does that mean? Does that relate to what you say is the "myth" of Alzheimer's?

PW: To some degree. The myth of Alzheimer's is that it is not one condition, which, I think is something that most physicians recognize. There really is a lot of heterogeneity in dementias. Moreover, what we currently call Alzheimer's disease is not really different from various forms of severe brain aging.

DG: In my work using both narrative ethnographic therapy techniques with people who suffer from dementia, we begin with the idea that there isn't just one type of "Alzheimer's disease." Every case is different, and, as the axiomatic saying goes, "once you've seen one person with Alzheimer's, you've seen one person with Alzheimer's." We need to expand our models to better address the issues that crop up when people have dementia: providing care for families, developing psychosocial interventions that improve quality of life, creating community spaces in which folks with memory loss can still find a sense of purpose. The current framing in our culture is very much concerned with the "search for a cure" that Peter and I, and most others, feel is an irresponsible exaggeration. My PhD research has explored in the form of a randomized control study whether intergenerational volunteering has any effect on quality of life. While the sample size was small, I observed a slower decline in cognitive functioning in the intervention group that volunteered with kids, as well as a reduction in stress, and an increase in sense of purpose, and sense of usefulness relative to the control group. Full study results will be published at a later date.

Q: How did we "get off the rails" on this? Why has there been the misguided, if you will, focus on Alzheimer's as a diagnosis?

PW: Few physicians reading this know that even Dr. Alzheimer doubted his own diagnosis. Physicians often hesitate to apply a diagnosis of Alzheimer's to cases of mild cognitive impairment. But we live in an information milieu where we are influenced by the flood of often hyped research on things such as drug treatment for dementia. Pharmaceutical companies are spending a lot of time and expense in this area. That's not all bad, but there needs to be more emphasis and responsibility on reporting and tracking post-marketing on the safety on dementia medications. We need to know what works, and we need to look at all possible avenues of treatment. We have focused way too much on biology and genetics. Now we are not saying that these are unimportant topics. Nor are we saying that we are anti-research. In fact curiosity and learning about our world is a defining feature of human beings. But we are asking the wrong questions and offering limited "solutions" such as polypharmacy to our elders. Instead of asking ourselves, "What drug should I prescribe"? we should be asking, "How can I help my patient stay alive, enjoy a good quality of life and remain engaged in society"? We have medicalized aging to an extreme degree.

DG: We go to medical meetings and talk to physicians and others about this. When we do, we ask, "how many of you remember when cognitive decline with aging was simply labeled "senility"? Invariably, almost all hands go up in the room. We have moved from a simple label to highly medicalized categories and need to ask ourselves whether we are better off now than we were when brain aging was not considered a pathological disease with terrifying cultural meanings. We want to move to a model of care and treatment that incorporates biology with the psychosocial issues associated with aging. We need a model that is more integrative, more sensitive to the social and cultural consequences of the labels that we use and explorative of the ecological causes of brain aging.

Q: How would a "more integrative" treatment model work?

DG: We suggest starting with an educational perspective to aging. Instead of doing things to people (ie, giving them a pill) engage them. This can do more to preserve brain function in the long run. Offer simple (yet potentially enjoyable and effective) activities such as reading, computer work, or puzzles. Even better would be to engage older people intergenerationally. As I mentioned, we are looking at whether people who volunteer maintain more of their mental acuity. We have found that indeed cognitive functioning does seem to decline less in those who volunteer in a stimulating environment with children. Peter has created a good laboratory to examine this premise, in The Intergenerational School (www.tisonline.org), which is where I conducted my research, also in collaboration with Judson Park, a local assisted living facility in Cleveland.

Q: What is The Intergenerational School, and how is it being used in your current study?

PW: In 1999, I founded this school with my wife Catherine. The Intergenerational School (http://www.tisonline.org) is an independent public multi-age community school that has a contract with the Ohio State Board of Education. The school serves learners of all ages from Cleveland and the surrounding suburbs. We provide educational and volunteer opportunities to family members of enrolled students and to older adults in the community. We think that bringing people of different ages together in a learning community is an important aspect of celebrating diversity. We emphasize family involvement in our school because this is so important to a child's academic progress.

DG: The school has provided us a venue for conducting the randomized controlled study. I recruited 20 Judson residents, all of whom had dementia diagnoses, and, over the last 5 months, 10 volunteered at the school and 10 underwent an educational seminar at Judson. I should note that two people in the school group reside in a locked Alzheimer's unit. These are people our culture would otherwise consider useless or beyond the point of societal contribution. That's also a part of the Myth of Alzheimer's: that the so-called disease creates non-persons.

Q: Are studies such as this the future of dementia research? Should they be?

PW: Evidence-based practice based on findings from randomized trials is only useful for deciding how many pills to prescribe. And the randomized trial is the most accepted data model for medical practice. We are saying that if this continues to be the case, and the randomized trial is the only yardstick we are willing to acknowledge, then treatments will be very limited. We need to attack this age-wave of dementia in creative yet still-rigorous ways. So, to that end, yes, we have conducted a "randomized trial." But we are also collecting ethnographical qualitative data. We advocate and work toward a model that will bring the wisdom of the ages and new future-oriented wisdoms back to the forefront of treatment.

DG: We are suggesting that a more-useful model of evaluation and treatment should include ethnographic, qualitative research: the marrow of lived experience. That includes storytelling, which does take time and may be seen by some as "soft" data. However, peoples' personal narratives -- the stories they tell about their health care -- affect the way they live their lives, and their health outcomes and well-being. Developing a gentler, more humanistic, and scientifically accurate model of care is much needed, especially in a culture that is aging so rapidly. That doesn't mean we are ignoring the hard science. There is of course a real biology with dementia. But we are not just a bunch of genes, or a bundle of plaques and tangles. We are "genes" that have evolved from prior experiences. It is well known that childhood exposure to lead, for example, has effects on the brain and body, years after the initial exposure. So to mitigate today's dementia or to prevent tomorrow's dementia, we need to take a big-picture approach. We need to go "more environmental."

Q: Go "environmental"? Are you saying medicine needs to go "green" in treating dementia?

PW:  I tell my colleagues, "I am an integrative, narrative, evolutionary physician." We have to look at dementias and aging in a new way. We need to go more environmental. To bring people around on this, we use metaphors, which is part of the narrative method of evaluation and treatment. For example, if we decide we are "at war" with disease, then that will inform our thinking on how to "attack" and treat it. We are suggesting that practitioners use an environmental metaphor to inform their thinking. I use the example of the virus. Nobody likes viruses. But in an environmental model, you can see how the little virus strives to survive and replicate. When we use things like antibiotics to kill organisms (often trying futilely to attack viral illnesses), we are using the war model. Of course we are not saying we want to "make peace" with viruses that can kill people, or make them very sick. We are saying treat the disease, but do it in a manner that incorporates the best tenets of public health, ecology, and sustainability. The scorched-earth, war model that informs the indiscriminate use of antibiotics for example, has fostered super-bugs that are resistant to many of our most powerful antibiotics. This has real public health consequences. We can't sustain an attack on these super-bugs when we have created the environment that allows them to flourish.

Q: What do you mean when you say, "think like a mountain"?

PW: Our decisions on treatment have short- and long-term consequences. Mountains represent endurance and sustainability. They change, but slowly. They communicate the importance of having a broad-base, deep connections to the earth, and aspiring and inspiring peaks.to life and our thinking. We have to pay more attention to a deeper bioethics and environmental medicine. We as physicians and practitioners should be taking our healing powers and expanding them by working with a richer evolutionary and narrative perspective.

DG: Right. We need to adopt a life-span perspective as part of a more integrative model and not just see Alzheimer's as an end-of-life "disease." Not just on an individual level, but on a population level. We are all going to grow older. We are all going to die. That may sound somewhat negative, but it is reality, and it carries a message of hope. No matter what we do, we can't fix all the problems of aging. But we can foster a sense of solidarity. We are all in this boat together. And we can't throw anyone overboard just because they're unfortunate enough to be labeled with a mental illness such as AD.

Geriatrics: Thanks for this consult, Dr. Whitehouse, Mr. George. What are your top three recommendations to your colleagues? What can they do right now to help patients and their families?

PW: Top three pieces of advice? You don't have to accept a diagnostic label like Alzheimer's disease and let it ruin your life. Keep mentally and physically active in your community Find your life purposes and legacies and create your story with them in mind. Thanks.