“Younger Adults With Alzheimer’s Are Key To Drug Search”–My Greatest Hope and Fear

lifestyle dementia technology multitasking

I realize there is much controversy about how money should be spent on Alzheimer’s research—whether more funds should go to a cure or go to prevention. Self-interest has kept me hoping that research finds a way to prevent Ralph from the currently inevitable slide into more serious dementia, yet I also have told myself that preventing Alzheimer’s from affecting masses of others is the more altruistic approach.

Then I read the article,“Younger Adults With Alzheimer’s Are Key To Drug Search,”  . Focusing on a 37-year-old woman diagnosed with Alzheimer’s, it claims that testing for certain Alzheimer’s genes could be a crucial part of the research to prevent Alzheimer’s:

“Until recently, people who inherited this gene had no hope of avoiding dementia and an early death. Now there is a glimmer of hope, thanks to a project called DIAN TU  that is allowing them to take part in a study of experimental Alzheimer’s drugs.

The project also could have a huge payoff for society, says Dr. Randall Bateman, a professor of neurology at Washington University in St. Louis. “It’s highly likely,” he says, that the first drug able to prevent or delay Alzheimer’s will emerge from studies of people genetically destined to get the disease.”

I hope Dr. Bateman is correct. But I can’t help thinking about Alzheimer’s in purely personal terms. And really, the pros and cons of the research were not what came to the forefront as I read the story.

All I could think about were my kids. Basically the Alzheimer’s gene is the monster in the room that has scared me too much to acknowledge out loud.

I doubt I am alone in this avoidance. I’ve noticed that children, most of them already grown, receive only passing mention on many spouse caregiver sites devoted to Alzheimer’s. And the heroic children caring for their parents with Alzheimer’s are so busy writing about their concern for those parents that they never mention fears about their own future.

But the genetic connection of Alzheimer’s within families does exist as this article, and many others make clear [“Alzheimer’s Disease Genetics Fact Sheet for the NIA”,   Alzheimer’s genes: Are you at Risk?”,    and a variety of scholarly studies.

The thought that Ralph’s and my kids may be at high risk for developing Alzheimer’s is horrifying.

But the thought of them getting tested horrifies me too. There are all kinds of genetic risks my descendents already face. Cancer, heart disease, and diabetes to name a few. Do they need to be burdened with the certainty, or even the likelihood of Alzheimer’s? I am someone who would rather not know my future (or the future of those I love, especially if that future is going to happen once I’m not around frankly). But my kids are not me. Eventually each will decide what course he or she wants to take.

While I certainly wish Ralph had not developed Alzheimer’s, we are adjusting day by day. In fact, I am fast reaching the point of not quite remembering what life was like before. Alzheimer’s has become central to our life as husband and wife, or as the ever wise Alzheimer’s Wife  recently posted, “part of the bargain.”

The kids didn’t buy into that bargain. But they eventually they may have to own it. It’s not fair, but it’s life.

6 thoughts on ““Younger Adults With Alzheimer’s Are Key To Drug Search”–My Greatest Hope and Fear

  1. I realize that this conversation happened a long time ago, but for anyone reading now: I’m the partner carrying the APOE-4 gene. I am the caregiver (with no trace of memory issues). My dad had Alzheimer’s. My mom is in her 90’s and does not. My husband does not have relatives with Alzheimer’s. He has worsening MCI. The truth is that most people with Alzheimer’s do NOT have the gene. And while it increases your risk, many people who do not have Alzheimer’s DO have the gene. Genes are not destiny. I chose to test through 23andMe because it reinforced my healthy lifestyle choices. I don’t believe there’s a magic bullet there, either. There’s a lot of chance in life, some genetic, some environmental, some just crazy unthought-of stuff we’ll hear about someday. If being tested will make you feel doomed, don’t do it. It made me feel empowered. Worry more about keeping up with your exercise class than your genes, even if we still have to do that online these days.

    Liked by 1 person

    1. Anne, My daughter and I were just discussing to test or not to test yesterday so your comment feels timely. We were discussing both in terms of breast cancer (prevalent in my family) and Alzheimer’s (Ralph and his father as well we suspect). I had the test about breast cancer years ago but evidently there are more tests for strains they couldn’t check for back then. Because cancer is something that can be treated, she feels knowing is very useful. With Alzheimer’s the decision is way more murky for all the reasons you list. Thanks so much for bringing up to us all.


  2. As a daughter who looked after her dad, I can say that yes, I do wonder if what he went through is what is in store for me. If it is, then I may have less than 20 sentient years ahead of me, which is a very scary thought for me – and for my son. Mostly, though, I tend not to dwell on it – head in sand kind of thing. Also, no one else in either parent’s family has had Alzheimers or vascular dementia and they all lived to be pretty old – so I’m hoping dad was a blip.

    Liked by 1 person

      1. It’s a tough one, isn’t it? It would be easier to think about testing if there were drugs to postpone/slow it down/cure it. My son is studying medicine so I wonder if he will initiate a conversation about testing!

        Liked by 1 person

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