Priya wrote:My name is Priya, I run my own coaching and consulting business and last year I took part in 23andme as I was interested in my ancestry. I’m British Asian. Both my Gradads got AD in their 70s so I was aware it was in my genes but in a vague naive kind of way. ... I sleep well and am the eternal learner but do sometimes blank in the middle of talking and lose my thread. I feel so scared. It’s terrifying to think I’m trying to create life whilst my own maybe cut short.
Let me reach out as your virtual mom to give you a hug and some reassurance. I am 66 and also an ApoE 4/4 and I am here to tell you that somehow with those genes I managed to have 3 kids (and yes, my BMI was over 30 also for the last of those 3 pregnancies) and now have two healthy grandchildren. I also am still cognitively normal: I'm in a trial for a BACE-1 inhibitor with a ton of screening requirements, and being cognitively normal is one of them. I also was able to work in a demanding position until just a few years ago, and went back to school for a second master's degree at age 57, complete with commuting 12 hours every weekend home and working one day a week while a full-time student. And no, I'm not superhuman--just someone like you: I like to learn and still do!
So first, some facts that may calm your racing heart and brain, with some sources to back them up:
Your lifetime risk to the age of 85 of being diagnosed with either Mild Cognitive Impairment (which means most people live at home with some adaptation) or dementia is estimated as of 2017 to be between 30% and 60%. The reasons for the wide variation is that we don't know enough about the risk and protective factors. ApoE 4 is NOT a risk for early onset dementia; only a risk for it after age 65. APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
And here is a quote from a large lifestyle intervention study in Finland, with the memorable name of the FINGER study. This quote refers specifically to people with ApoE 4, who were older and also had risk factors such as obesity, high blood pressure, etc. (It will soon be replicated in the U.S. and several other nations as the POINTER study, with older adults having risk factors for dementia.)
Many people worry that genetic risk factors for dementia may thwart potential benefits from healthy lifestyle changes. We were very happy to see that this was not the case in our intervention, which was started early, before the onset of substantial cognitive impairment," says Adjunct Professor Alina Solomon, the lead author of the study.
Here's the results of a population-based study in a large group of people near the Mayo Clinic in Minnesota, which has the advantage of following typical people who have no particular bias in being selected for a study or pursuing being in a study.
Association of lifetime intellectual enrichment with cognitive decline in the older population.https://www.ncbi.nlm.nih.gov/pubmed/25054282
For APOE4 carriers with high lifetime intellectual enrichment (75th percentile of education/occupation score and midlife to late-life cognitive activity), the onset of cognitive impairment was approximately 8.7 years later compared with low lifetime intellectual enrichment (25th percentile of education/occupation score and mid/late-life cognitive activity
Anecdotal evidence: My dad was at least an apoE 3/4 and died of heart disease at age 67. His father died of stomach cancer at age 48. Yet no one in our family has had early cancer, and my cardiac age on a coronary calcium scan is 39 years, with zero calcium plaque. He had diabetes, I don't; but something else must be protecting me and my 3 siblings from any sign of cardiac disease, a known ApoE 4/4 risk. My mother was also at least an Apoe 3/4, and had lifetime low thyroid (as did several of her sisters). She managed to have 4 children in 5 years and lived to the age of 86. She died from congestive heart failure, and also had moderate dementia, but it only became evident after she had a serious case of campylobacter at the age of 80. She also had uncontrolled high blood pressure and atrial fibrillation.
Sleeping well and being a lifelong learner are two of the strongest associations with helping your brain to be both resistant
to the effects of ApoE 4 and resilient
through compensations for any changes that may happen. Don't worry about losing your train of thought. That is simply a function of frontal lobe attention and working memory, both of which are highly affected by stress and emotions. Just imagine trying to give a speech in front of Parliament while they are shouting questions and you can imagine the effects of both stress and emotions on anyone's attention, with no credit to ApoE 4!
The science of both lifestyle interventions and probable preventative drug therapy is moving fast, and you are certainly young enough to make the most of it in the future. I guarantee that after the rollercoaster of emotions calms down, you will feel more like yourself again. And as someone who also struggled for a while to have a baby, and had a miscarriage with our first pregnancy, I'm sending hugs to you and your husband and wishes that you both are soon welcoming a child into your lives.
So my dear Priya, please look forward to a long and happy life.