The Alzheimer's SolutionDr. Kenneth Kosik, my co-author, talks about Alzheimer’s and healthcare reform on “An Evening With Guy Rathbun” on KCBX-FM in California.
Listen to the audio here.
… And on WAMC-FM in New York here. The Santa Barbara Independent interviewed Dr. Kosik about the book, and about his Santa Barbara-based Center for Cognitive Fitness and Innovative Therapies. You can read that article here.
Remember the misguided rhetoric about “death panels” during the healthcare reform debate?
Take a look at the CLASS Act, a national voluntary insurance program created by the law, which does just the opposite. In fact, it offers some glimmers of hope for those with Alzheimer’s. A recent analysis by the nonprofit Alzheimer’s Association shows that the CLASS Act will bring:
And, finally, a key provision strikes at the heart of the fragmented nature of Alzheimer’s care: the law will create an Independence at Home pilot project to provide primary care services to Medicare recipients in lower-cost community settings, rather than expensive institutions. This jibes with the concept of the cognitive shop, or center, outlined in “The Alzheimer’s Solution” – a place embedded in the community that offers an array of diagnostic tools and support services from nonmedical patient navigators to nurses to physicians.
The measures proposed in the law are about more than just politics. They are in fact the beginning of an important national dialogue about healthcare – an important dialogue to have as society faces a potential Alzheimer’s epidemic.
It’s called an state-of-the-science consensus report, and the consensus is staggering – and bleak.
A panel of doctors and researchers convened by the National Institutes of Health conducted a massive review of studies on Alzheimer’s and came to the conclusion that the causes are still unknown, and there is no solid scientific evidence that the disease can be prevented or even slowed in its progress. (A link to the draft report can be found on the always-useful National Institute of Aging website.)
“There are no modifiable issues or variables that are going to prevent Alzheimer’s or cognitive decline, and people should know that,” Carl Bell, MD, professor of psychiatry at the School of Public Health at the University of Illinois at Chicago and a panel member, told Emily P. Walker, reporter for MedPage Today, earlier this week. (Walker is a knowledgeable medical writer: she helped me with research as I wrote my book, “Chemobrain,” in 2008).
For its report, titled “Preventing Alzheimer’s Disease and Cognitive Decline,” the panel looked at every tantalizing lead and hobby horse issue that has currency in the larger discussion about Alzheimer’s: nutrition and diet, exercise, drinking, smoking, social networks, economic factors, environment, use of statins and cardiac health, and genetic risk factors.
As Walker notes, Alzheimer’s is the fifth leading cause of death in the U.S., and mortality from the disease has increased 47% from 2000 to 2006, as a result of a decline in death rates from other chronic diseases.
The landscape is parched, to say the least.
“There is currently no evidence considered to be of even moderate scientific quality supporting the association of any modifiable factor (nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins, environmental exposures) with reduced risk of Alzheimer’s disease,” the report authors said.
The report did conclude that a genetic mutation known as APOE4 (for apolipoprotein E) is strongly associated with the risk of the disease.
One factor is strongly linked to Alzheimer’s, however, but people don’t have any control over it. That is presence of the apolipoprotein E (apoE) DNA variation, which studies show is strongly associated with the risk of Alzheimer’s disease.
Other often-talked-about factors were evaluated as preventives. A Mediterranean diet (high in olive oil, vegetables, fruits, grains, fish), physical activity, use of statins to reduce cholesterol, moderate alcohol consumption, more years of education – all tipped the scale slightly in terms of reducing Alzheimer’s risk. But the stress here should be on “slightly,” according to the report.
A pleasant emotion can linger
Can feelings trump memory in those with amnesia or dementia? Does your mother remember the emotion she felt when you gave her a flower, even after she has forgotten about the visit herself? Even if she cannot remember exactly who you are? NPR has a report here on a study of patients with amnesia published in PNAS, Proceedings of the National Academy of Sciences.
The study, by brain researchers in Iowa, examined patients with amnesia because of damage to the hippocampus, a structure in the brain that is key to memory retention. (The study, titled “Sustained experience of emotion after loss of memory in patients with amnesia,” by Justin S. Feinstein, Melissa C. Duff, and Daniel Tranel, can be found here.)
“…What would happen to the feeling of an emotion if we could no longer remember the emotion-inducing event?” the authors ask. “Would the feeling fade away in parallel with the vanquished memory? Alternatively, is it possible that the feeling could persist without the memory?”
To answer these questions, the researchers studied five people with severe amnesia due to damage to the hippocampus. Feinstein showed the amnesia patients film clips designed to trigger sadness — one scene, in Sophie’s Choice, showed Meryl Streep’s daughter being ripped away from her arms by a Nazi soldier. Shortly after the film, the amnesia patients could not remember any details about the clips, but their feeling of sadness lingered. Sunny, humorous film clips (Bill Cosby, When Harry Met Sally) induced happiness — for about 17 minutes or so afterward.
The results can just as easily apply to someone with Alzheimer’s. “So often I’ll listen to family members say, ‘Oh, I don’t go and visit grandpa anymore because 10 minutes after I leave, he doesn’t even remember I came,’” Feinstein, a graduate student in neuropsychology at the University of Iowa, told NPR reporter Deborah Franklin. But a happy feeling might linger — reason enough for a visit.
The authors are well aware of the social implications, particularly for dementia patients in nursing homes. “The results of this study have direct implications for how society treats individuals with memory disorders (such as patients with Alzheimer’s disease), as events that have long been forgotten could continue to induce suffering or well-being,” they write.
“For example, a simple visit or telephone call from family members might have a lingering positive influence on a patient’s affective state even though the patient may quickly forget the visit or phone call.” But it can work the other way: “On the other hand, routine neglect from staff at nursing homes may leave the patient feeling sad, frustrated, and lonely (even though the patient can’t remember why).”
In the end, the authors offer a sweeping but common-sense prescription. “As the number of individuals suffering from Alzheimer’s disease and other forms of dementia reaches epidemic proportions, it will be imperative for society to follow a scientifically-informed standard of care for patients with memory impairments. Here we provide clear evidence showing that the reasons for treating amnesic patients with respect and dignity go beyond simple human morals.”
Image courtesy Wikimedia Commons
Wall Street Journal writer Amy Dockser Marcus highlights Alzheimer’s prevention — and the methods used at Dr. Kenneth Kosik’s CFIT clinic in Santa Barbara — in this week’s Personal Journal. You can read the story and try the brainteasers here. Dr. Kosik, co-director of the Neuroscience Research Institute at the University of California, Santa Barbara, launched CFIT in 2009 to provide information on lifestyle changes that may promote cognitive fitness and delay the onset of Alzheimer’s. In fact, that’s what CFIT stands for: Cognitive Fitness and Innovative Therapies.
Dr. Kosik’s new book (I’m a co-author), “The Alzheimer’s Solution,” is due out in mid-May, and provides an in-depth look at the strategies he recommends for preventive measures. But Dockser Marcus sums up this stream of research well — and interviews Dr. Kosik at length. “By the time someone walks in my door with symptoms of the disease, it’s too late” to stop it, Dr. Kosik told Dockser Marcus. Participants at CFIT (50 people are currently enrolled) range in age from their 50s to their 80s. Each person receives a physical and cognitive evaluation, and then gets a personalized “prescription” for exercise, diet, music therapy, cognitive challenges, and socializing. All these steps are designed to maintain brain fitness and stave off cognitive decline.
Dockser Marcus cites research, including the well-known Nun Study, that found that a rich cognitive life can help prevent or delay the onset of dementia. CFIT is working to set up a control group of elders at another local assisted-living facility who aren’t participating in the program. A controlled study, common in scientific research, could compare the cognitive health of the two groups in the future.
Read more about CFIT here.
About the “The Alzheimer’s Solution” by Dr. Kenneth S. Kosik and Ellen Clegg
Sometimes we must travel far away to see ourselves more accurately, to see what we have and what we lack. And so in the course of my research on Alzheimer’s disease, I traveled to the state of Antioquia in Colombia and saw the reflection of our challenge in facing this disease among the campesinos of a remote community. Here, a rare genetic form of Alzheimer’s disease, which strikes in middle age, takes an enormous toll on families and communities.
Colombia is not the solution to what ails Alzheimer’s disease care in the United State, but the story wakes us up to some of the missing pieces in our care model. In the absence of a sophisticated medical system in these rural areas, families must care for those with dementia on their own, they must continue to integrate them into their lives rather than create the isolation centers we call assisted living facilities or nursing homes. Children are not excluded from witnessing the final chapter of life. Sometimes our goal seems simply to make those with dementia invisible in our daily lives.
The plight of dementia has moved us to build a research empire and a care industry whose costs represent a significant fraction of the health care quagmire we now face. Like most large amorphous social structures assembled over time, we have a patchwork laden with historical baggage and outdated views that is unprepared for the magnitude of the problem. Alzheimer’s disease gets shoehorned into a medical system that has no place for it. As currently configured, the disease neither fits into a tertiary care center where the economic engine is surgery, nor into the primary care practice where the expertise in topics from diet to genetics is missing, as is the breadth of non-medical services, and the economic incentives. Physicians are limited to what is amenable to pills or the knife. Alzheimer’s disease is not amenable to either. It is our strong conviction that we as a society can do a far better job and do so more effectively and at a lower cost.
Step one is detecting Alzheimer’s disease in the brain before a person becomes impaired. The tools of early detection are in hand—genetic predictions, biomarker testing, brain imaging. These tools take us beyond prevention programs that simply exhort the watch words to anyone who will listen. The modern tools of early detection allow personalized risk assessment and personalized approaches to an intervention program.
While the medical profession all but ignores the problem of dementia, the gap is filled by fringe elements such as health products and vitamin vendors, and web sites filled with dubious information and blinking advertisements. It is perhaps an irony of our time that with so many avenues to discover knowledge at our command, we can find ourselves starved for information in a sea churning with nothing but information. The particular knowledge craved, for example, by those given a life-threatening diagnosis, often lies outside the expertise of physicians – even specialists. While flickers of hope appear on the Web through encounters with others and a shared experience, judging the reliability of this experience – and its fit with our own – can be difficult. Nevertheless, the means is there in the vast reach of the internet to find information and test its reliability. No longer is one person – an expert – expected to know everything and render infallible judgment. That burdensome view of the expert physician is no-longer tenable, nor necessary.
The first step is to treat Alzheimer’s disease before it occurs. We now have good evidence for a set of preventive measures. If adopted, these interventions can delay the onset of the disease to the point that competing mortality will markedly reduce its incidence. Delaying dementia onset by five years would halve the prevalence of dementia. The reduction in costs and suffering of early intervention would be enormous.
Most of the interventions are well-known and the data which supports them is overwhelming. They include exercise, attention to diet, cognitive stimulation, social engagement, control of diabetes, blood pressure, and lipid levels. But, as the all-too-familiar saying goes—the devil is in the details. How much exercise, which diet, and what exactly is cognitive stimulation? How can we encourage adherence to a program that offers what people need, what they want, and what they can do? And social engagement is not for everybody. We need to consider that guidelines are for populations, but we are a community of individuals.
Alzheimer’s is one of the few serious diseases that runs its course without physical pain. Of course an Alzheimer patient can experience pain, but the disease itself is not painful. Needless to say, the painlessness of Alzheimer’s disease offers little comfort. Why? Because Alzheimer’s disease robs us of something more valuable than a limb or sight or mobility. It robs us of our own identities—first our memories and personality and then our dignity. Alzheimer’s disease steals our faculties little by little. We never really know how much of the world and family the Alzheimer patient can grasp. The challenge of understanding the feelings of others is vast under the best of conditions, but in the case of Alzheimer’s disease we must glean meaning from a transient facial expression or an eye movement. Sometimes, inside that enigmatic look of Alzheimer patient may lie a hope, even a request, to bring an otherwise wonderful life to a dignified conclusion.
