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Knowing About Forgetting
By Sara Davidson, The New York Times
March 17, 2009
This morning I couldn’t remember the street number of my house. My own house! Don’t panic, I thought, don’t struggle to remember it. Just go on with other things, and it’ll float to the surface. But it didn’t, so I opened the front door and read the street numbers aloud, trying to fix them in my brain.
Lots of people have these lapses, I know. But one week ago, I was sitting with my mother, who has Alzheimer’s disease, in a memory care center in Honolulu. We were in the “living room” filled with 20 Benjamin Buttons, 20 people aging backward, regressing to infancy. Not in body, as in the movie, but in mind.
One woman who’d been a political journalist sat hugging a teddy bear. “What is your full name?” a nurses’ assistant asked the group. Half of them shook their heads, baffled. My mother remembers her name but sometimes thinks I’m her older sister. She seems happy, though, as she eats dinner with the group in silence before they’re herded to the parlor to watch a DVD of “The Parent Trap.” She’s not suffering, but I am, feeling heartsick every time I drive away.
Not only my mother but both her parents had dementia and were institutionalized. So when I have a lapse like today’s, I ask myself, “Is it starting?”
There’s a blood test one can take that shows if you carry a gene that’s a risk factor for Alzheimer’s disease. Should I take it? My gut reaction is no, since there’s no cure or way to prevent the disease.
Nonetheless, I do research on the genetics of Alzheimer’s. According to a report by the Alzheimer’s Disease Education and Referral Center, no gene has been identified as the cause of late-onset Alzheimer’s, which occurs after 60. (That’s not late for this reporter; it’s now!) But one genetic risk factor has been confirmed by many studies to increase the likelihood of developing the disease. That risk factor is the gene variant APOE4, found on chromosome 19. If you carry this variant, you’re more prone to develop Alzheimer’s disease — 40 percent of people with the disease have APOE4, according to the report.
On the other hand, you may not develop Alzheimer’s even if you test positive for APOE4, and if you don’t carry the gene, you still may contract the disease.
I make a list of the pro’s and con’s of testing for APOE4.
PRO:
1. Information is power. Dr. Lenny Guarente, a biology professor at M.I.T. who studies genes that may determine how long we live, says people who test positive for APOE4 often “handle the information well.” Many prefer to know and adjust to the fact than live with doubts.
2. You can make plans. During my yearly physical, I told my doctor I’m worried about memory loss because dementia runs in my family. He suggested I tell my children how I’d want to be cared for if the need should arise. Ideally, I’d like to be cared for in my home or in a place with some of my friends, where there are animals and gardens, good books read aloud, spiritual talks, music and films better than “The Parent Trap.” But I don’t know of such a place. If I learned that I carry the risk factor for Alzheimer’s, I might be propelled to find or create such a situation while I’m still able.
CON:
1. The body is mysterious. Spontaneous healing can occur, and disease can strike people in peak health. In Alzheimer’s disease, it’s believed that several genes combine with environmental factors to bring on the disease, so why focus on one gene that may or may not be the trigger?
2. We’re dealing not with the present but the future. Who knows what medical advances will occur in the next 20 years? Who knows if there’ll even be life on the planet?
I could go back and forth, but the salient question is, would I conduct my life differently if I knew I was at risk? Probably not. Still, it would be a terrific comfort to find out I do not have the gene. But is that comfort worth gambling on the far more likely result — learning that I do carry it?
I had an uncle, Art, who in his 80s used to write his address on the back of his hand, explaining with a laugh that if he forgot his address, he’d be able to get home. At the time I thought he was joking, but now I know he was not.
And he never developed Alzheimer’s.
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