The ideal reader of my forthcoming book about early-onset Alzheimer’s disease would have just recently been diagnosed with early-onset Alzheimer’s disease or some similar form of dementia. Perhaps the individual is in shock, or in denial. The statistics say that that roughly two-thirds of the victims are women. But that can be misleading in the early-onset realm. In my experience, men and women are usually rather balanced. Many of us were at our peak salaries, and derived part of our identity from our job or from the idea we were supporting ourselves and our families.
After I left my job, I discovered that the Alzheimer’s Association organized many stimulating activities. The rationale is that Alzheimer’s is typically a slow-moving disease, and in some cases, people can hang on for as long as twenty years. Of course, this is a progressive disease, but research has shown that people can appreciate art and music even in the terminal stage.
Sometimes I describe the Alzheimer’s Association as a social club, on account of all of the outings and plays, with no cost to us. The first play Paula and I attended was a musical, based on a sliver of War and Peace. Tolstoy might be rolling in his grave, but it was great entertainment. More recently, we attended an excellent production of Othello at the A.R.T. in Cambridge. As a college-writing instructor at Northeastern University in the nineties, I became well-acquainted with Shakespeare’s greatest tragedies including Othello, the Moor. At the time, the O.J. Simpson trial was fresh in our minds, and it was stimulating to note the comparisons.
The A.R.T. production was fresh. Rather than grounding the play in the Elizabethan world, the production was set somewhat in the present time. One scene was set in a gym where Othello and Iago worked out, with numerous screens in the background showing global hotspots, in the CNN style.
But this is all prologue. My objective is to explain how I can help people who are very new to the concept of dementia. First, I would say, “How long have you been feeling this way? Are you scared? Can you remember when you first noticed that you didn’t feel like yourself?” These are challenging questions. You might want to get a notepad and a comfortable chair, and write about your reactions. Does Alzheimer’s run in your family? Even if it does, don’t panic. My understanding is that having a parent with Alzheimer’s is just one risk factor. You might have a higher risk than the general population. I have seen figures suggesting that even if you do have the APOE4 gene, your risk goes up by only roughly 40 percent. And it took some time to allay my brother’s fears that he was at risk. Fortunately, I was able to draw on Alzheimer’s Association figures and facts, and that was the end of the conversation.
But there are other aspects in which you can drive your destiny, at least partially. Here are a couple of examples. The first is close to my heart, literally; it is regular exercise. I stopped jogging sometime in my forties, partly because I sensed that I wasn’t doing my lower joints any favors. But now I swim or walk half an hour to an hour a day.
Another way to keep yourself sharp is to stay socially engaged. After you leave your job, there are many ways that people with dementia can remain engaged, from support groups to going to a place of worship to volunteering at a senior center to meeting with friends on a regular basis. Across the country, the Alzheimer’s Association has events to keep people living with the disease busy and engaged. Even if you’re depressed and don’t feel up to going out, you’ll find that being with other people who know about and accept your diagnosis will raise your mood by helping you to stay engaged.
Third is pursuing a healthy diet. It’s up to the people living with the disease to make the decisions. If you like olive oil, get in the habit of making your salad dressing. It’s quite simple. The cornerstone of the Mediterranean Diet is olive oil. And I love dipping crusty bread in the oil. If you are in a hurry, you can use the Paul Newman brand, but I tend to find it too acidic. I haven’t measured this yet, but I prefer my own concoction, which is roughly two parts olive oil, and one part balsam vinegar, with a moderate amount of pepper.
But this is not all about lifestyles. There are a plethora of choices. The guiding concept is to live in the moment, and avoid self-pity. And look for moments that others miss.