A warm welcome Lynn, from an ApoE 4/4 woman who is a healthy 66, and wants to reassure you that the Moderators here don't delete a post for being in the wrong spot!! Sometimes folks just get busy with jobs, family, etc. and a new user slips by for a day or so.MyDestinyisfromGod wrote:Hi my name is Lynn. I am 53...I have an AZ50 of 86. The risk goes up almost 10 percent each year until by the age of 90, it just says <95. The one thing that was a bit confusing to me was the instantaneous risk. If you look at age 95 it shows 26%. That seems a bit irrelevant if it is next to certain that I’ll have it by age 90 anyway. So I thought I might be missing something important with that.
Secondly, I wondered if the results would be different if my Dad who had Alz (died 3 years ago) had early onset. If I inherited something from him, and he did have early onset, would that mean my AZ50 would be younger (and the rest correspondingly so)? The best recollection my brother and sister have, I think he showed really clear symptoms at age 63. He looked at a frisbee at a birthday party at 62 and didn’t know what it was....
We're happy you found us and, as you can see from MarcR's reply, we're very interested in brave souls like you who have used the new DASH service. I haven't, but I think I can answer what seems like a contradiction between your risk of Alzheimer's disease (AD) at age 86 or 90, and your "instantaneous risk" at age 95.
I think it helps to start with a different example from a happier topic. If you look at when babies start to walk, some start as early as 9 months, most are taking at least a few steps by 12 months, a few outliers (like me) don't walk until their 15 months old (I blame the playpen) and a very few don't walk until after age 18 months, or even age 2 or 3. So if you told parents that their child has a 50% chance of walking by their first birthday, that would make sense. If you said they have a 90% chance of walking by age 18 months that would also make sense. And if you said that if they're not walking by age 18 months, they still have a 30 % chance of walking between 18 months and 24 months, that would also make sense. But that group of babies not walking until 18-24 months would be the outliers, getting smaller and smaller each month (happily).
Alzheimer's is the same: the incidence is highest in most studies in the 70's and 80's, then decreases but each group that gets older without AD is going to have some portion that gets diagnosed eventually. So you have supposedly a 50% chance of having a diagnosis of AD by age 86, and a 90% chance of a diagnosis by age 90. But if you survive to age 95 without dementia (and the average lifespan for women our age is now 86), you will be part of a very small group, that still has a small (25%) chance of getting AD that year.
If you want to look at the bright side (and I am an optimist), you have a 50% chance of NOT getting Alzheimer's during what is projected to be your lifespan from an actuarial table. Since DASH does not take into account lifestyle factors that may move the needle to a later age, your risk could be lower.
As for your Dad, I doubt he had early onset Alzheimer's, since when they say "onset before age 65", they mean a diagnosis of Alzheimer's before age 65. And that's a rough cut-off; as the nurse told you, most people with early onset have a strong family history of dementia starting in the early to mid-50's. What you dad had with not being able to recall the name "frisbee", which he might not have seen since 1960, was a "tip of the tongue" moment when a word in his memory didn't come back. Not being able to throw it well could have been that he never threw it in the 1960's either, or that his coordination was going. But those things probably didn't represent a significant enough decrease in his skills to be considered dementia; more likely he was moving into Mild Cognitive Impairment (MCI). Even a diagnosis at age 63 would likely have been affected by having something in addition to ApoE 4--high blood pressure, diabetes, coronary artery disease, the medication your mother referred to, or even an early brain injury (if he was in WWII or the Korean War) or sports-related concussions. My dad died of cardiac arrest at 67, after having diabetes for 20 years and severe coronary artery disease that went undetected. He would have been at least ApoE 3/4. Yet my 65 year old brother has no sign of heart disease, and my "cardiac age" on a coronary calcium scan is 39.
So, my friend, we are more than the 50% of our genes that each parent gave us. Your environment, your education, your occupation, your social and spiritual beliefs, your diet, exercise, sleep habits, your ability to view getting older with positive emotions--all those are protective factors that your dad and his siblings may not have had.
It can feel like a rollercoaster at high speed to get all this info in a report. Give yourself permission to step away from it for a while, if needed, and to look around at all the good things in life. Then, when you're ready, take baby steps to do what makes sense for you.