Updated: May 2
Numerous developments over the last few decades have helped extend the average lifespan for people with Down syndrome from 25 to 65+ years. The occurrence of Down syndrome has increased by 30% in the last few decades – currently 1 in 691 pregnancies result in a baby with Down syndrome. It occurs across all races, ethnicities, religions, and income levels.
Much of this progress stems from identifying and addressing serious conditions at birth such as heart defects, blood conditions such as Leukemia, and Gastrointestinal issues, as well as improved quality of life developments.
People with Down syndrome are outliving their caregivers. We are witnessing the first generation of seniors with DS.
While we celebrate this progress, extended life has introduced new health, financial, and housing challenges, many of which we explore in Beyond Down Syndrome posts and throughout The Essential Guide for Families with Down Syndrome. Today, let’s focus on dementia and Alzheimer’s disease and its link with Down syndrome.
Alzheimer’s and Down syndrome
So many of us have watched our relatives wilt under the pressure of dementia. At first, they are just a bit confused and perhaps embarrassed. They are also afraid of the impending future, the loss of connection, and the lack of control. We fear this fate for ourselves and certainly for our families. For families with Down syndrome, dementia is a real concern and while there are no cures today, there is a lot of research in this space and there is something we all can do to make the future brighter.
Alzheimer’s is a specific form of dementia that results from high concentrations of amyloid proteins which often lead to memory loss, confused cognitive thinking, and delayed reasoning skills. Alzheimer’s affects approximately 12% of the general population, typically in their 60s and older.
However, because people with Down syndrome have three 21st chromosomes and the Amyloid Precursor Protein gene (APP) that produces an amyloid protein, the primary building block for Alzheimer’s, is located on Chromosome 21, according to the Journal of Intellectual Disabilities, the lifetime risk of DS-related Alzheimer’s disease (DS-AD) is greater than 90%! JAMA reports that Alzheimer’s disease is now the leading cause of death for adults with Down syndrome. Hence, Alzheimer’s has certainly become a disease with greater concern and focus for Down syndrome families and research organizations alike.
Not only is Alzheimer’s so common, but genetic markers exist in nearly all with Down syndrome by the age of 40. Alzheimer’s is afflicting people with Down syndrome earlier and faster than the general population.
As with all health issues for people with Down syndrome, it is important not to attribute symptoms merely to Down syndrome, but to consider Alzheimer’s as well. Early signs include changes to behavior, changes in coordination, increased need for assistance for personal hygiene, and seizures. The National Task Group on Intellectual Disabilities and Dementia Practices offers screening tests and information. If you observe any of these signs, seek the attention of a medical professional familiar with Down syndrome and Alzheimer’s.
Down Syndrome and Alzheimer’s Research
Until recently, Down syndrome research funding was at record low levels despite the fact Down syndrome is the leading cause of intellectual and developmental delay. Decoding the genetic makeup and new focus on Down syndrome inclusion and awareness has helped to bolster NIH research funding from $22M (2010) to $77M (2019). Research initiatives span a wide range of topics including sleep apnea, Light and Sound Stimulation, and Alzheimer’s. Perhaps the Down syndrome community holds the key to improvement in Alzheimer’s diagnosis, care, and management given the high frequency of cases.
Prevention and Management
Today, there is no cure for Alzheimer’s disease. However, there is considerable research underway exploring nutritional, sleep, and medication which may serve to delay or improve conditions and eventually hold the key to eradicating Alzheimer’s for people with Down syndrome and the general population as a whole. New anti-amyloid drugs that are currently in development may be part of a future combination therapy that could significantly slow the progression of protein build-up.
LuMind IDSC Partnership
Beyond Down Syndrome and The Essential Guide have partnered with LuMind IDSC to
support their research coordination and community involvement. LuMind IDSC has over 300k online followers and has gathered and allocated over $100M for Down syndrome research since 2004. LuMind IDSC serves as the bridge between the Down syndrome community and research efforts, so families don’t have to talk directly with research/pharmacological firms but with people who understand the nuances and needs of those with Down syndrome.
Since LuMind IDSC is involved in many research and clinical trial initiatives, we have opted to contribute a portion of all Essential Guide book proceeds to their Alzheimer’s research given the pervasiveness and sense of urgency within the Down syndrome community.
How Can We Help?
A recent LuMind IDSC survey notes that 90% of families are in favor of clinical research and trials, yet only 5% are engaged in such activity. In order to support these important initiatives, the Down syndrome community needs to sign up for clinical trials and research. As the bridge, LuMind IDSC ensures interested parties understand what trials and research entail. Some research can be done by remote written assessment while others require participants to go to a clinic for further analysis and testing.
This testing ranges from basic health metrics (weight, blood pressure, MRIs, or observation) to more invasive measures such as lumbar punctures. It is important to be aware of the scope of such testing. Typically, you can opt out of specific tests which your self-advocate is not comfortable with. In some cases, the participant is paid for their service which may include transportation and lodging to associated clinics. To learn more about current trials and how you may consider participating, contact the LuMind IDSC research team at DSResearch@lumindidsc.org.
Nowadays, nearly every family in America is somehow afflicted by dementia or Alzheimer’s disease. Perhaps the Down syndrome community has a unique opportunity to help drive solutions for everyone by contributing and participating in clinical trials and research.
Our loved ones are living longer to enjoy and share their joy and talents with others. Together, we can help improve and further extend their quality of life. I encourage you to take some time to learn, contribute, and participate.
For more information
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 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 age 65, often exhibiting first signs decades earlier? Together we can make a difference!
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