There is so much media attention to Alzheimer’s these days that it can be hard to tell fact from fiction, or hope from hype. I would like to address a few common questions that arise and help sort out some of the information.
Is Alzheimer’s a new disease? There is nothing to suggest this, but there are a couple of reasons why its visibility has increased in recent years. First, even though dementia has existed for a long time, we have been redefining it over the generations. Centuries ago, it may have been viewed as a form of “insanity,” and many people inhabiting the asylums of old probably had some form of dementia. During much of the 20thcentury, people who lived with cognitive changes were usually described as having “senility”; it is only in the past few decades that the label of Alzheimer’s has been more frequently applied.
When I was in medical training, the diagnosis of Alzheimer’s was reserved for people who were less than 65 years old when their symptoms began. Older people were labeled simply as having “senile dementia.” However, 65 is just an arbitrary number and the brains of older and younger people with Alzheimer’s look the same; so for the past 35 years, all people fitting the syndrome have been considered to have Alzheimer’s.
But there are politics involved as well. When Dr. Alois Alzheimer famously described his 51-year old patient in 1901, it was not the first time he had seen the illness. Although she was younger than usual, he was aware that her brain had similar changes to older patients he had studied. But there is some evidence that he was pressured to report her disease as brand new by the institute’s senior psychiatrist, Emil Kraepelin.
Dr. Kraepelin was a leading proponent of explaining mental illness in terms of biological changes in the brain. As such, he was in disagreement with many of the theories of Freud and his followers, and Kraepelin wanted to use this case to further his arguments; so he pressured Dr. Alzheimer to state that this woman had a kind if disease that was different from older people who were simply viewed as “senile.”
And many decades later, the decision to re-label people of all ages as Alzheimer’s—while technically correct from a medical standpoint—was also motivated in part by the realization that if people of all ages were labeled Alzheimer’s, the reported number of those affected would increase 25-fold, and greatly increase the potential for funding and charitable donations.
So, is Alzheimer’s increasing or not? Some people lived to an advanced age centuries ago, but not nearly as often. Many people died young due to warfare, poor working conditions, infections, and other medical diseases for which there was no treatment. As our average life expectancy has increased from 46 in 1900 to nearly 80 today, many more people are living into old age. While Alzheimer’s is not considered normal aging, the main risk for the condition is advancing age; so a greater number of old people means a higher number of people living with the diagnosis.
There is a confusing part to all this: studies show that the lifetime risk of developing Alzheimer’s is decreasing with each succeeding generation. This is probably the result of better preventive health and better treatments for cardiovascular disease. So why is the total number of Americans with Alzheimer’s increasing every year, and projected to triple by 2050?
You can blame us Baby Boomers; we are by far the largest generation the world has ever seen. And now we are turning 65 at a rate of 10,000 Americans every day! So even though our lifetime risk may be less than that of our elders, there are just a lot more of us getting old right now. (Of course, that also means that even if no new treatments are developed, the number of people with Alzheimer’s will drop significantly in the latter half of the century—when all the Boomers pass away.)
So, if I develop Alzheimer’s, is it in my genes? There are several genes that are suspected of increasing one’s risk for Alzheimer’s, but for the majority of people, that risk is small. Only about 1% of people with the diagnosis have a strong genetic component. In that small group, most family members will develop Alzheimer’s, usually at an early age. If you only have one or two close relatives with Alzheimer’s, your risk is slightly higher than if you didn’t have any relatives affected, but you may well never develop the condition.
If I am diagnosed with Alzheimer’s, was it my fault for not preventing it? In a word, no. As our bodies age, more things can happen to us. Alzheimer’s—like arthritis or hardening of the arteries—becomes more likely the longer our bodies have been exposed to life and all that entails.
Lately, there has been a lot of emphasis on “successful aging.” While it is a laudable goal to try and maintain our health, the term is regretful, because it implies that anyone who develops any medical condition as they age has somehow failed. Since we are mortal, then by this definition, we are all doomed to fail at some point.
There are some things we can do to lower our risk of Alzheimer’s. Those steps that appear to be well supported by research include: regular exercise, controlling blood pressure and sugar levels, eating a diet high in fruits and vegetables and low in saturated fat, being socially connected, and engaging our brains in meaningful ways. Beyond that, there are a slew “preventions” or “cures” that have been touted by the media, but that have no strong evidence of being the miracle they claim to be.
Anyone can get Alzheimer’s. It can happen to people who are brilliant, people who exercise vigorously, or those who eat a good diet. Ultimately, illness is an intrinsic part of being mortal human beings, and there are probably many factors that can cause the changes we call Alzheimer’s. But I do not say that to be pessimistic—quite the opposite.
Our best chance for a life worth living is to stop tying ourselves to magical treatments and anti-aging remedies, and instead focus on how we can create full and meaningful lives, regardless of how long we live or what diagnoses come our way. This is why my approach to dementia focuses on optimizing well-being (I use a framework that includes identity, connectedness, security, autonomy, meaning, growth, and joy). These aspects of well-being are essential for all people, regardless of age, culture, or ability. They can be optimized in all people, including those who live with Alzheimer’s and other forms of dementia. And they will never be available in pill form.
Any kind of caregiving is going to require coordinating with other people and entities, such as doctors, therapists, insurance, maybe other family members or non-medical caregivers. This is called coordinated care.
We have created a library of support for family caregivers who may find themselves overwhelmed or confused as the symptoms of Alzheimer's disease.
Caregiving and relationship expert, Barry J. Jacobs, has a new book that focuses on marriage for people a couple of decades into their matrimonial journey.