Most of us know a family member or friend with dementia or Alzheimer's disease. In fact, nearly all of us do!
Adults with Down syndrome are nearly certain to be afflicted with Alzheimer's by the time they are 65! Over 95%! Very scary!
"But wait, how can this be true? I thought only 12% of the general population gets Alzheimer's."
This is true, but the statistics are so much higher for people with Down syndrome because the amyloid precursor protein (APP) gene, which is strongly associated with the formation of amyloid peptides and plaques, a hallmark of Alzheimer’s disease. resides on the 21st chromosome - yes, the same chromosome that our sons and daughters have three of.
In fact, most people with Down syndrome will show signs of Alzheimer's by age 40, with the brains of almost all individuals with Down syndrome having significant levels of amyloid plaques, before building to full onset by their 60s.
"Why haven't I heard about this before? Is this new?"
While many are aware of this, it has become a much bigger issue as the average lifespan for people with Down syndrome has stretched from around 27 in the '80s to over 60 in the 2010's and beyond. So until the '90s, most people with Down syndrome never lived to a point where this Alzheimer's risk became prevalent. Now, Alzheimer's is the #1 cause of death for those with Down syndrome.
"Okay, now you have my attention. What does Alzheimer's look like?"
Dementia or Alzheimer's symptoms and conditions can vary by person, but generally, most start with slight memory loss which can often be assessed as common-day forgetfulness. However, this will become more common until it leads to confusion, misplaced items, and repeating themselves. With a growing disconnect from their previous self, victims may develop behavioral issues, mood changes, delusions, obsessiveness, and loss of routine skills and basic hygiene. Finally, people with Alzheimer's will often lose connection to reality, become unfamiliar with loved ones, and lose basic bodily function including speech.
If you haven't lived with a person with Alzheimer's, it is a horrible digression for the individual and perhaps equally difficult for the helpless family members that surround them.
"Is Alzheimer's represented differently in the Down syndrome population?"
We've already mentioned the greater frequency of Alzheimer's within the Down syndrome population. Otherwise, symptoms are quite similar to the general population. However, there is also evidence that Alzheimer's progresses faster within the Down syndrome population than the general public.
It is unproven as yet whether those within the Down syndrome community with greater cognitive skills have less likelihood, severity, or advanced timeline as others who may have lesser cognitive ability, but it is a fair assumption.
"Is there a supplement or something else that can help?"
Various websites might promote different solutions, but there is no current cure for Alzheimer's. There is no prevention mechanism for Alzheimer's either. There are suggestions to keep brains active. While routine can be our friend, it can leave our brain less sharp. Continuing to prime our brains with new tasks, challenges, and growth can help. More sleep and better overall help have been suggested to help. More friendships and deeper relationships can improve mental outlook and thus reduce cases of depression as well. These tips can help us all lead healthier, more fulfilling lives. Whether they delay or reduce the effect of Alzheimer's is unclear.
"I've heard of new meds. Can they help?"
Yes, there have been a recent new medication, Leqembi, which touts they can slow the progression of Alzheimer's. While they don't propose to prevent or cure Alzheimer's, it is a significant positive development. However, all - 100% - of the studies for Leqembi have been conducted in the general population with 0% involvement of anyone with Down syndrome. Given the unknown impact of these drugs on our population, these meds are not recommended for the Down syndrome community at this point.
"Are there studies being conducted that can help?"
Yes, there are studies now being conducted across the country specifically within the Down syndrome community. Not only can these potential provide solutions for our community in the future, but they may offer solutions for the general public given the large data set within the Down syndrome population.
LuMind IDSC is sponsoring several studies specifically focused on Alzheimer's within the Down syndrome community. LuMind focuses on bridging the gap between the Down syndrome community and Down syndrome research. They fund studies and coordinate these studies with various pharmaceutical and research firms so that we, the general public, don't have to identify those researchers and interpret their technical jargon.
LuMind IDSC is the Leader:
300,000: people in LuMind IDSC's online community - the largest digital down syndrome community
$85 Mln: devoted to Down syndrome research projects since 2004
14: Clinical site organizations in the Down Syndrome Clinical Trials Network (DS-CTN)
"How can I help?"
While 85% of survey respondents agree that Alzheimer's research for the Down syndrome community is important, only 7% have actually signed up for a study. You can help by considering participation in a study.
Generally, if your loved one is 25 or older, they can be considered for the LIFE-DSR (Longitudinal Investigation for the Enhancement of Down Syndrome Research), an "observational" data-gathering study. Gwendolyn just participated in her first session at the Barrow Institute in Phoenix this past week. She (and I) provided a lot of information about basic health, meds, and cognitive ability during two 2-hour sessions. The staff was fabulous in arranging a convenient visit, paying for travel expenses if necessary, and treating Gwendolyn with respect and gratitude. We want to do our part to find a solution.
Beyond Down Syndrome partners with LuMind IDSC to provide a portion of all our Essential Guide book proceeds specifically earmarked to support LuMind IDSC's Alzheimer's research programs. We believe the solution is out there. It just takes money, volunteers, and a passionate and determined coordinating sponsor like LuMind IDSC.
If your loved one is over 35, they can be considered for more intensive data gathering and future trials. Tests could include MRI, PET Scan, and Lumbar Punctures. LuMind, and Barrow - one of many participating regional clinics, is clear that all questions and tests are voluntary and the participant can opt-out any time.
"What should I do in the meantime?"
The disease is foreboding. The lack of solutions is scary. But considerable progress has been made in the last several decades to double the lifespan of those with Down syndrome. Now, growing resources are directing attention to avoiding or curing Alzheimer's. It's time to get excited about the possibilities. It's time to get involved:
First, monitor signs of early onset of Alzheimer's.
Second, consider the health tips above for your loved one.
Third, consider participating in a research study with LuMind IDSC.
Finally, lobby your local and state representatives to support more Alzheimer's research, especially the inclusion of representatives from the Down syndrome community. National Down Syndrome Congress (NDSC) and National Down Syndrome Society (NDSS) are quite active in developing self-advocacy skills and in lobbying in Washington DC.
I encourage you to put independent living on your family's radar. Learn more about other health issues that afflict adults with Down syndrome and how to advocate for your loved one in The Essential Guide for Families with Down Syndrome.
Start making your loved one's possibilities a reality!
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
GET YOUR COPY HERE!
Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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