Our recent news cycle has teemed with reports from the Alzheimer’s Association International Conference (AAIC18), an annual gathering of scientists and researchers from around the globe sharing their latest findings. I follow this news closely because of selfish worry I may develop dementia following the loss of both parents to this devastating brain disease.
My middle-aged siblings and I are children of dementia.
A history lesson may be in order for perspective. The German physician Alois Alzheimer studied Auguste Deter in 1906; you can think of Auguste as dementia’s patient zero. Dr. Alzheimer worked to understand neurodegenerative disease by observing this woman’s behavior. In the 100+ years since his initial work, science has been unsuccessful in delivering fully effective detection techniques, treatment or cure for the collection of diseases we know as dementia.
Initially scouring mainstream media reports from this year’s research conference I became concerned. I learned the risk of dementia increases if you:
– Had fewer than three children (check)
– Spent less time cumulatively pregnant, especially in the first trimester (check)
– Did not take hormone replacement therapy at the onset of menopause (check)
I learned dementia risk decreases when a woman’s menstruation begins at or around 13 years and her menopause onset is after age 45 (check).
Where I remain unclear about my dementia risk is having my infertility result from endometriosis, taking birth control pills not to prevent pregnancy but to control the intense pain of my endometriosis and taking a cocktail of fertility drugs in my peak pregnancy years to unsuccessfully increase my odds of having children.
I have a deeper understanding after studying source documents from the conference to know that although this research is groundbreaking, it’s just too early to draw conclusions. “This is observational study,’ said Rachel Whitmer, Professor of Public Heath Sciences at UC Davis School of Medicine who co-led the Kaiser Permanente study in the role of women’s reproductive history with dementia. “It does not tell you the mechanisms, only who is at a lower or higher risk. The information will allow scientists to take the next step to do more experimental work and really delve in.”
“Because Alzheimer’s disease is a life course disease in my opinion, the risk starts in the womb and then is affected by your genes, your early life risk factors, your diet, your exercise and so much more,” states Dr. Richard Issacson who founded the Alzheimer’s Prevention Clinic at New York-Presbyterian/Weill Cornell Medical Center.
What we know today:
· Dementia has long been considered an aging disease. Add to that the statistical reality that women live longer than men. What resulted was a prevailing view that more women than men would simply be diagnosed with dementia. Although scientists suspected sex hormones like estrogen and progesterone might play a role in the disease, the risk around women’s reproductive history wasn’t fully studied. This new research may result in more effective detection and prevention protocol distinguished by gender.
· The Kaiser Permanente study involved the most diverse population over the longest period of time. Starting in 1964 the study looked at women aged 40-55 of different education level, race and midlife health status. Diagnosis of their chronic conditions and brain disease were culled from 2016-2017 records. The study findings are monumental in laying the foundation for next steps in experimentation and may in time address the other questions we have as middle-aged women facing the prospect of dementia.
· Women aren’t diagnosed with dementia early enough due to the verbal clinical testing used today for detection according to a study from the University of Illinois at Chicago. Women excel in the verbal memory skills these tests build upon, which can mask the early stage of the disease delaying a woman’s detection or treatment. The flip side of this testing anomaly may be over diagnosis in men making this finding an excellent opportunity to change not only testing standards to account for gender differences, but also to improve early disease detection for all.
What can we do to advance the next steps in this landmark research?
– Support more research through funding: If you have means, use it to further the crucial next steps in these experiments. Join Maria Shriver’s The Women’s Alzheimer’s Movement because, “women are at the epicenter of the Alzheimer’s crisis”.
– Support research through activism: It’s critically important to raise our voices together to make dementia research a continued priority at our federal level. The Alzheimer’s Impact Movement (AIM), the sister organization of the Alzheimer’s Association is a great place to start.
Lisa B Capp is a writer, activist and a dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board Desert Southwest, is a member of the Alzheimer’s Impact Movement and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profits around the globe. Her passion for building strength through transition in her professional work is now focused on helping others find their power through the caregiving journey. For more information visit her website at www.lisabcapp.com. Connect on Twitter @lisabcapp and LinkedIn at LisaBCapp.