As many of you know, the national Alzheimer’s Association leadership has labeled the Baby Boomers “Generation Alzheimer’s”. As one who is planted firmly in the center of that cohort, it’s time I responded to that characterization.
The reason we are felt to be the Alzheimer’s Generation is because when the Baby Boomers reach their 70s and 80s, there will be more people living with Alzheimer’s and other dementias than our country has ever seen.
This is true, and there is a simple reason why: Because there will be more 70- and 80-year olds than the country has ever seen!
It’s a matter of numbers – there are over 70 million of us. So have you figured out that as of that same date, there will also be more 70- and 80-year olds with healthy brains than the country has ever seen? More 70- and 80-year old CEOs, performers, writers and marathon runners? So why aren’t people calling us the “Healthy Brain Generation”??
Those same aging demographics will likely make us the Heart Attack Generation, the Cancer Generation, the Stroke Generation and even the Polymyalgia Rheumatica Generation as well (though probably not the Diabetes Generation, as the current childhood obesity epidemic looks to outpace us there).
I do not deny that the number of people living with dementia is rapidly growing. But as I recently heard a politician remark: “Statistics are like lampposts–many people use them more for support than for illumination.” It is time to stop scaring people and start illuminating them.
Besides being alarmist, there are two other problems with this label. The first is that it is profoundly ageist. Basically, this is one more example of an emerging group of older Americans being demonized as an approaching plague and a burden on our society.
In my own journey to better understand the spectrum of forgetfulness and cognitive disability, I have found that the only true dementia experts are those who have lived with the diagnosis. With all due respect to my former professors of neurology and psychiatry, I have learned more from Richard Taylor, Christine Bryden and the hundreds of people I have cared for over the years than from all of my scholarly training. What I have learned is that these true experts have much to teach us about the experience of dementia, which will in turn lead to remarkable new ways to provide optimal care and support.
Based on this, one could also say that the aging Baby Boomers will bring an unprecedented amount of wisdom to us about the experience of dementia, thus exponentially increasing our own knowledge and skills (if we can get beyond the stigmatization and partner with them).
Kudos to the folks at the University of Waterloo, Ontario, Canada. Doctoral candidate Jennifer Carson has recently shared with me the work she is doing with Dr. Sherry Dupuis and others to move beyond our often-paternalistic view of “person-centered care” and promote authentic partnerships between people living with dementia and their care partners. They have designed a model and a toolkit to help people create such partnerships, in which the person living with dementia is actively involved in daily decisions and planning. Why aren’t efforts like these placed front-and-center at our dementia symposia, instead of one more talk on the structure of the tau protein?
My last issue with the “Alzheimer’s Generation” label is that a closer examination of that concept reveals a basic contradiction with the association’s stated goal of creating ” a world without Alzheimer’s”. Consider the implications of our generation being labeled as such and ask yourself: Why will the aging Boomers produce an unprecedented number of people living with dementia? Is it because we are uniquely susceptible to some mosquito-borne dementia virus? Because we don’t eat as well as other generations? Because we inhaled a bit too much Agent Orange or dropped a little LSD during our youth?
No, the reason is simply because our cohort will be entering old age–the time when dementia becomes most prevalent. This focus highlights the very fact that dementia is, by and large, a condition intimately related to aging of the body and brain. Therefore, it seems clear that it will be very difficult to create a world without dementia, unless we create a world without old people. Soylent Green, anyone?
Enough complaining. Here is how I would frame the coming dementia “boom”: The aging of our population and all the attendant conditions associated with advanced age are a reminder that our world is changing irrevocably. Just as with the arrival of the automobile or the internet, we need a paradigm shift. We are challenged to examine the way our society functions and to re-imagine what will be needed to ensure a healthy future society. In this case, we must radically change our view of dementia and the systems of care we have created, as our current approach does not work and will not sustain us in the years to come. We also need to re-integrate elders, with and without dementia, into the fabric of our society–not as passive recipients of care, but through the kind of authentic partnerships that pioneers like the Waterloo group have put forward.
This will require some hard work and there is no time to lose. Where to begin? Well, for a start, you could ask a couple of Baby Boomers for their thoughts. After all, the numbers clearly show that we will be the “Old People with New Ideas Generation”!