Alzheimer’s disease: A wake-up call in Colombia
About the forthcoming book 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Like most large amorphous social structures assembled over time, we have a patchwork laden with historical baggage and outdated views that is unprepared for the magnitude of the problem.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.
