Intergenerational discussions about Early Onset Alzheimer's
Disclaimer: I am not an expert and I have not done any research for this article. I am just a guy with a perspective.
For a little context
My family carries the PSEN2 gene mutation with an average age of onset around 48 years old. But growing up, I didn’t know that. I was just a kid, then a high schooler, then a college student who had been mostly unaware of our family’s historical relationship with Alzheimer’s. Then I went to a family reunion and saw my uncle with early symptoms, and began hearing stories. Gradually, as the science matured and a distant cousin published a book, I learned of our plight. As a young father and husband, at age 30 I became a participant in the DIAN study.
My parents knew Alzheimer’s disease ran in the family and that we get sick in our early 50’s. In fact, grandma Ester routinely reminded us, “Live life before you’re 50, because in this family, you never know!” But they didn’t have the scientific clarity and proof we do today. So, they basically followed grandma’s advice. We worked hard, played harder, and laughed a lot. They made the best choice the could make — live a fun life and not focus on the Alzheimer’s that might be coming. Just love life every day for as long as you get.
As soon as we learned there was research specifically tailored to our gene pool (PSEN1, PSEN2, APP), I jumped in along with my brother and father. That’s when the intergenerational discussions really began. Three generations: My father, my brother and me, and my children, all waiting in line for the unwanted inheritance. Ten years later, my dad has passed and my brother tested negative. I don’t know my gene status yet, so I’m still involved in research and advocacy.
“What do we tell our children?” “When do we tell them about the genetic risks?” “How do we best support Mom?” “How do we live well inside this situation?” These are some of the questions we’ve had along the way, and how we chose to answer them.
Regarding the kids
Professionals we’ve learned from and our own experiences agree that it is best to dialogue openly and honestly with your children about the genetic risks and life implications of EOAD, at an age-appropriate level.
I don’t pretend to be a perfect parent. We sought advice from our parents, we read a few parenting books that were recommended to us by people we respect, and then we made it up as we went along. We’re not experts. But our kids seem to be handling everything quite well, so maybe we did a few things right. When we began this journey, our kids were 4 and 2 years old. We decided to be age-appropriately honest and answer any questions they had without expounding — never sharing more than we felt they could bear. By doing so over the past 10 years, we believe our authentic integrity has been maintained while not making things too burdensome for the kids. One fascinating result is that their innocent naiveté has shielded them from worrying about their own futures. Rather, they have remained almost entirely concerned for their grandpa during his decline and for me as I age. I’m sure there will come a time where that will shift, but for now it’s nice.
At the DIAD Family Conference in London, during a breakout session, we learned from a family therapist who is an expert in treating families with Huntington’s disease. She strongly expressed that children whose families withhold the genetic truth from them until older age commonly respond very poorly once the truth is exposed. They feel deceived and often rebel, sometimes launching into risky and destructive behavior. But children told about the genetic risks throughout their upbringing adjust well and remain quite healthy and happy. This advice came at a perfect time for us, as our children were approaching their teen years and we needed to decide just how much truth to share. Upon our return home, we shared pretty much all of it, and have continued to answer any questions they’ve had along the way.
How do we support Mom?
Support your caregiving parent’s needs and requests as best you can.
One of the biggest difficulties with early onset Alzheimer’s is its effects on the immediate family — especially the spouse or partner. Every family dynamic is different. And in my experience every family has its junk along with its joys. I am grateful for the positive relationships we have in our family, but this disease has definitely tested them. We had debates and very heated arguments. We all just wanted what was best for Dad (and Mom) but we regularly disagreed about what that looked like. In the end, we came to realize that Mom was Dad’s wife and she bore the heaviest burdens. The best thing we could do was ask Mom what she needed and help her as best as we could. We live an hour’s drive from her and we are in the thick of life with jobs, kids, etc. but we did whatever we could to help them live with happiness and sanity.
Living well in the situation
Remember that everyone dies — choose how you want to live, even with EOAD.
Ultimately, how we deal with adversity drastically impacts our lives. Do we retreat into solitude or seek the comfort of community? Do we focus on the negative and become emotional victims or take responsibility for our responses to difficulty and choose to make the best of the situation, no matter how terrible it is? In the end, everyone is born, everyone dies, and nobody knows the time we’re given in between. So the question is, how will we choose to live each day? As for me and my family, we’re doing the best we can to focus on faith, hope, and love — and to enjoy every day.