MiniJunkie wrote:...
I found out a couple of years ago (I’m 47) that I have double 4E, but it has only now started to sink in because my mother was just diagnosed with Alzheimer’s. Feeling quite down and hopeless about it but your post is very reassuring!
Welcome, Minijunkie!
I'm so glad that you found our site and that my earlier reply to another new user is reassuring! Life takes us down some very unexpected paths, doesn't it? The good news is that you are not alone on the ApoE 4/4 path--neither is your mother in her recent diagnosis.
I don't want to overwhelm you, so let me just offer a few thoughts, first about your health:
Researchers are zeroing in more and more on the specific risks and pre-clinical phases of Alzheimer's disease in those with ApoE4. Partly that's because there are an estimated 7 million people just in the U.S. who have ApoE 4/4 (about 2% of the population). Many population-based studies here and in other countries provide strong evidence that up to 40% of dementia cases could be prevented using the kinds of strategies recommended by Stavia, the ApoE 4/4 doctor who is the author of our
Primer. In fact, the "incidence" of Alzheimer's is down about 20% in the US and many first-world countries, attributed in large part to public health efforts to improve diets, reduce smoking and alcohol abuse, prevent diabetes, treat mental illness, provide clean air and water and extend higher education to more people.
We also know that women may be at particular risk after menopause and may need to consider with their primary care provider hormone replacement therapy for a relatively short period of years.
We are very close to a blood test that would identify people with the biomarkers of pre-clinical Alzheimer's changes in the brain (amyloid-beta and tau) 15-20 years before any signs of brain changes in neurons or observed changes in behavior. I recently heard a leading researcher predict that similar to people with a family history of heart disease or cancer, she thinks it will soon be common for people ages 50-55 to get a test for signs of preclinical changes and then have an array of possible drug and non-drug treatments to remove amyloid and tau and improve vascular and metabolic health, reduce inflammation and prevent infections that can cross into the brain.
I'm guessing that your mother may be in her mid-70's or so, which for many people has been the point at which some of the memory or language or planning difficulties lead to a diagnosis of Alzheimer's disease (AD). Assuming that your mother is still in the early (mild) stages of the disease, you may want to use the same strategies in the Primer to optimize her diet and have her doctor check for some key markers (See
Biomarkers for suggestions by Dr. Stavia on what to prioritize if you have to pay out of pocket.
Although opinions on the Alzheimer's Association tend to vary based on people's individual experiences with either their local chapter or the website, I'd encourage you to consider informing yourself of their supports here:
Live Well and
Just Diagnosed.
I have recently met three people diagnosed with Alzheimer's disease more than 3 years ago. All are still active in their communities, speaking in public on the need to treat Alzheimer's as a chronic disease and not a stigma. All are able to continue areas of interest, including travel--sometimes with help of others for planning or for note-taking.
FInally, one of the most affirming views I have seen and believe is this:
The Canadian Charter of Rights for People with Dementia
Your mom is still your mom, and also a person "who happens to have a diagnosis of dementia" as one friend put it. This is a new journey for both of you, but may be the most meaningful path you will walk with her.
Hugs from another 4/4