tori0417 wrote:I just found out from 23andme that I carry 2 copies of the E4 gene. I am 34, married and have 2 small children and I cant help but feel like Im going to lose my 60's+ to Alzheimers. What I have read seems to have shown a significant chance of being diagnosed. By nature I am a planner and feel like I need to go on a crusade to further genetic testing and find out what I can do to possibly slow things down. Has anyone received these results and what did you do? I am so upset.
As Tincup and Andrea have shared, your feelings upon learning that you have ApoE 4/4 are common--and with time can become less fearsome. I am exactly twice your age (68) and have ApoE 4/4 also. I have not lost my 60's to Alzheimer's, and hope to not lose my 70's to it either. Nor have I experienced heart disease, although my dad died of cardiac arrest at 67. Like you, I am by nature a planner, so I had a coronary calcium scan two years ago that reported my "cardiac age" was 39, with zero plaque.
Take-away mantra: Your ApoE 4/4 status is only a risk, not a destiny.
Here's some science to back that up: A 2017 meta-analysis of three large population cohorts and a 4th cohort of people with family history of Alzheimer's in the US and Netherlands found that in people ages 60-85, the risk of AD was not as great as earlier studies using Alzheimer's clinic patients found:
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4...; and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2.
So at twice your age, Tori, I have a 45-70% chance of NOT having to face a diagnosis of mild cognitive impairment or Alzheimer's in my lifetime! I participated in the Generations Study mentioned in that quote and had hours of testing every six months for 36 months. I learned in March 2020 that all my scores on in-depth cognitive testing are in the normal to the superior range. I'm not an outlier: several friends with ApoE 4/4 in their 60's have had similar results in the Generations study. An active 78 year old with ApoE 4/4 on the forum was told his scores showed NO decline for the last 3 years by Stanford researchers in a different study of "resilient" at-risk individuals. A woman with ApoE4/4 remains fine five years after she joined this forum at age 77.
It may well be within our power to keep using our brains throughout our lives. The strategies suggested in Dr. Stavia's Primer
are endorsed by leading researchers with overwhelming consensus on the big ideas and you should feel empowered by using them.
Our forum has great resources and support ready for any questions you have. You may want to check out a new resource aimed at women: The XX Brain: The Groundbreaking Science Empowering Women to Maximize Cognitive Health and Prevent Alzheimer's Disease
by Dr Lisa Mosconi, PhD. I haven't read the book, but am eagerly awaiting its arrival in the mail on Friday.) Dr. Mosconi is the director of the Women's Brain Initiative and associate director of the Alzheimer's Prevention Clinic at Weill Cornell Medical College and has been committed to improving the research on brain health for women and prevention of Alzheimer's since her grandmother died with the disease. Aside from Alzheimer's, it sounds like this is a great book for any woman--and I plan to get it for my 36 year old ApoE 3/4 daughter who also has 2 small children!
People my age are doing our best to show that lifestyle factors, social and cognitive engagement and participation in clinical trials can help people like you and my three adult children to plan for long and fulfilling lives. As a mom and grandmother, I want you to know how much I respect your honest emotions, and believe that your planning skills are exactly what you need to prove your own resilience!