Seven years after being diagnosed with dementia, one of the questions that Richard Taylor (http://www.richardtaylorphd.com/) asks is whether there was one moment when he did not have Alzheimer’s and then one when he did. We are a society that is fond of precise answers. But in most things that truly matter, especially when they have to do with identity and relationships, precise answers are denied us. Was there a moment when I was not in love with my wife and then one when I was? A moment when I did not enjoy music or literature and one when I did?
Presumably there is a specific moment in which any disease comes into being. But since we still do not know what actually causes Alzheimer’s, it is impossible to define that moment. Is it the formation of the first speck of plaque on the brain? Or does that speck form in response to another agent we have not yet identified that appeared months, even years earlier? Can an oncologist say with precision when a single cell goes rogue and cancer comes into being? Even the common cold resists having its genesis precisely defined—our bodies are exposed to various viruses daily, rebuffing most until one somehow reaches critical mass and reveals itself through a scratchy throat or a congested nose.
So we generally define the moment where a condition begins through the appearance of symptoms followed by a diagnosis, whether we are speaking of falling in love or suffering a head cold. In the case of dementia, symptoms are often first recognized in hindsight—“now that I look back…” The changes occur in such small increments that there is almost never a clear demarcation between “a little forgetful” and diagnosable progressive memory loss. This can lead to vigilant monitoring of our loved ones (“Honey, you just told me that!”) and whispered conversations during family gatherings (“Does she seem any different to you?”), which generally succeed only in raising anxiety levels for all concerned. Whether we are speaking of falling in love or developing dementia, we are talking about a process.
This will change, at least in some ways, as early testing becomes widely available. People will be learning that they “have” Alzheimer’s disease years, even decades, before they begin to show symptoms. This is mostly a good thing. It will provide a strong incentive for the lifestyle changes that may delay the onset of symptoms or mitigate their severity when they do appear (although we need to emphasize the word “may”). It may open the way to new forms of pharmacological intervention that will further delay the onset of symptoms—the failure of recent drug trials suggests to some that the time to treat AD effectively is before it is fully developed.
Meanwhile, the part of us that demands precision will lead to a growing number of carefully defined clinical categories (MCI, “mild cognitive impairment,” will likely appear in the new edition of the DSM) that may succeed only in reducing complex human beings to a narrow diagnostic label that confines, limits and provokes greater anxiety.
In our book we tell the story of a woman who grew up in Taiwan in a multi-generational household. It was only when she came to the United States to attend medical school that she realized that her grandfather had AD. “He changed as he grew older, but to us he was just Grandfather.” We will all change as we get older, and the changes we experience will not always fit into a tidy clinical category. After a thorough cognitive evaluation, a friend’s mother was given the diagnosis “pleasantly confused.” It is not a diagnosis likely to make its way into the DSM, but I would like to see it in wider use, for while it speaks of change and loss, it also speaks of laughter, love and joy.
Perhaps one day we will have the medical resources to successfully prevent or treat AD and other forms of dementia, but that day is likely decades off. Meanwhile, cherished friends and family members will be journeying into various forms of progressive memory loss, some of which will fit into tidy clinical categories and some which will not. In either case, they will remain whole human beings who need to be surrounded by people who love them, appreciate them and enjoy them. We are all living with dementia, and we need to learn how to respond to it with love and laughter rather than fear and anxiety.