On the longest day of the year, the Alzheimer’s Association wants you to think. Use your precious and, God-willing, still-intact brain and think. Spend five of those one thousand glorious minutes of summer solstice daylight thinking about the people you know who are dealing with dementia and what the words “longest day” might mean to them.
The Alzheimer’s Association is betting you do know someone whose spouse, parent, grandparent, aunt, uncle, friend or neighbor is living with Alzheimer’s disease. Someone who knows the loneliness of caring for a person who once had so much to say and now says nothing at all, all day long. Or maybe she says the same thing over and over again. Or maybe he speaks, but it makes no sense. Maybe she or he is sundowning—there’s a good “longest-day” word—but in the dementia world, sundowning is not so pretty. It means getting agitated and cranky and sometimes even scary right when the rest of the world is getting ready for bed.
The longest day. Where my ancestors came from, it was and is a day of celebration. Of joyous gratitude for summer light and warmth. And many of the people who are in the early stage of Alzheimer’s are going to be able to enjoy the longest day of the year just as much, if not more, than the rest of us, because no one is better at living in the moment than people who can’t remember. If you can no longer follow a book or a movie, then why not get outside and smell the June flowers and soak up the extra June hours? Why not savor every strawberry as if it’s the first one you ever ate? Because as far as you know, it is.
But for people who are in the middle or later stages of the illness, all that extra daylight could be confusing or exhausting or both. Which means it will be exhausting for their caregivers, too. And lest you think we’re talking about a boutique illness, a sliver of the medical world, here are the hard facts: more than five million Americans are currently living with Alzheimer’s disease. Officially, Alzheimer’s is now the sixth leading cause of death in the U.S. But new research shows that it could be third, right behind heart disease and cancer. Last month, the New York Times ran a story headlined: “Alzheimer’s, the Neglected Epidemic,” citing research showing that in just one year, 2010, Alzheimer’s was the underlying cause in half a million deaths in this country.
For all kinds of reasons, it has been very hard to get people to feel the urgency of the Alzheimer’s epidemic. Maybe, until you see it up close, it is easy to dismiss as some sort of inevitable curse of old age. Something far off in the sundowning distance. But as the baby boomers grow old, we are going to be in deep trouble if we don’t step it up. Current federal funding for Alzheimer’s research is half a billion dollars a year. Sounds like a lot, doesn’t it? But cancer research commands more than five billion federal dollars a year. Heart disease: nearly two billion. And those investment have made a huge difference. Heart disease and cancer death rates are declining, even as Alzheimer’s deaths soar.
Some of the people you know who are affected by Alzheimer’s disease might be part of a “Longest Day” fundraising team. Give them a boost, if you can. But at the very least? Think of them. On the longest day or, better yet, every day.
Need help getting fired up about the urgency of the Alzheimer’s epidemic? Watch actor and comedian Seth Rogen’s testimony before Congress.
And save the date for my book launch: 3pm, September 7, at Elliott Bay Book Company in Seattle. You can pre-order Her Beautiful Brain from Elliott Bay, Powell’s Books, or the bookseller of your choice.