Dementia and Down Syndrome
As individuals with Down Syndrome are now living well into middle and older age, they are facing many of the challenges that come with advanced age, including dementia. 
There are still many questions concerning how and why the disease develops among those living with Down Syndrome, but doctors and researchers believe it is likely related to genes on chromosome 21. While most humans have pairs of chromosomes (one copy from the mother and one from the father), people with Down Syndrome have a full or partial extra copy of chromosome 21. Chromosome 21 carries a gene that is responsible for the production of proteins associated with Alzheimer’s disease. This chromosome also contains genes involved in the aging process that may result in an increased risk of Alzheimer’s disease. Complicating the dementia diagnosis is the reality that people with Down Syndrome already experience accelerated aging, which means by the time they reach their 40s and 50s, they are dealing with conditions most commonly seen among the elderly. For these reasons, Early-Onset Alzheimer’s disease is more common in those living with Down Syndrome. However, it is important to note that dementia is not a forgone conclusion; many will never manifest symptoms of the disease in their lifetime.
Making an Accurate Diagnosis
An adult with Down Syndrome is less likely to bring up concerns about memory issues on their own, so it often falls upon a perceptive caregiver to pick up on the subtle clues that cognitive functions are changing based on what they know to be the person’s baseline behaviors and abilities. Knowing the person’s baseline is absolutely critical in making an accurate diagnosis. The National Down Syndrome Society notes that “many of the common conditions related to aging and Down syndrome can be mistaken as dementia if not identified properly (hearing loss, low thyroid function, vision loss, pain, sleep apnea, etc…).” After you have ruled out those possibilities, then you can begin to develop a more appropriate care plan that integrates the dementia diagnosis. This more comprehensive approach should greatly improve quality of life moving forward.
Next Steps
Once you have a confirmed diagnosis, it’s important to build a support network of individuals who understand the nuances and progressive nature of dementia. This might include a neurologist, geriatrician, or primary care physician with whom the individual is comfortable, a gerontologist (who specializes in the mental, social, and physical aspects of aging), Certified Dementia Practitioners (which you will find in memory care communities like Autumn Leaves), day stay or respite care programs, in-home care providers, or even state assistance. The dementia journey is not an easy one, so having plenty of trustworthy resources available for questions, assistance, and emotional support should be a top priority.
Life with Down Syndrome and Dementia
Autumn Leaves resident, Phyllis
There are many challenges a person with Down Syndrome may face in their lifetime, including dementia, but none should ever prohibit them from living a vibrant and rewarding life, full of purpose and joy. At Autumn Leaves, we’ve had the great honor of caring for many individuals with Down Syndrome. It has been truly heartwarming to watch these residents thrive and live with dignity, often becoming the heart of community life for residents and staff alike. Seeing them make new friends, take on daily responsibilities, and make happy memories (however fleeting in nature), has enriched both their lives and ours.
Sources: Alzheimer’s Association, National Down Syndrome Society
