By Susan Kavanaugh
Week before last, I met a truly amazing neurologist: Dr. Marwan Sabbagh.
Mimi, Joe, and Madison Rogers know him well and he was all they said he would be—brilliant, charismatic, and deeply committed to his work with Alzheimer’s and Memory Disorder. Dr. Sabbagh was speaking at a conference in Phoenix focused on the established connection between Down Syndrome and Alzheimer’s. I thought I knew a few things, but I was in for a bundle of new information.
“Physicians have known about the connection between Down Syndrome and Alzheimer’s disease for 30 years, but only 2 years ago everyone came together to finally do some serous research on the matter,” Dr. Sabbagh noted, while presenting at the conference. “80% of Down Syndrome patients will get Alzheimer’s in later years. Since 1 in 700 live births results in a child with Down Syndrome diagnosis, we are looking at the largest group of pre-senile dementia in the world.”
Individuals born with Down Syndrome face a long list of potential physical challenges. The National Down Syndrome Society accounts for common medical conditions in this population:
- Sensory Loss, ears and eyes
- Obstructive Sleep Apnea
- Cervical Spine abnormalities
- Celiac Disease
- Early onset Alzheimer’s Disease
My take away message was “Begin to watch for symptoms in your loved one’s behavior as early as 30 years of age.” It is during this time, according to Dr. Sabbagh, that PETs will begin to show the amyloid plaque build up so familiar to Alzheimer’s disease. Blood sugar metabolism will begin slowing down as well.
“Alzheimer’s symptoms can show up as early as 10-20 years in advance of the full onset. Sleep disturbances are an early indication, since interrupted sleep adds to amyloid production,” Dr. Sabbagh said.
According to the Desert Southwest Chapter of the Alzheimer’s Association as a caregiver for an adult with Down Syndrome, a few of the early symptoms that you might watch for also include:
- Reduced interest in being sociable, conversing, or expressing thoughts
- Decreased enthusiasm for usual activities
- Decline in ability to pay attention
- Sadness, fearfulness, or anxiety
- Seizures that begin in adulthood
“The Alzheimer's Association Desert Southwest Chapter provides several free services to caregivers including a 24/7 information and referral helpline, and Family Care Consultation services to help families deal with current emotional and other resource needs and plan for future needs,” said Cynthia Vargo, Central Region Director for the Desert Southwest Chapter. “Education classes and workshops to learn about the disease and how to provide services for those affected, and support groups for any caregiver who is providing services for an individual with memory loss are also available.”
Louise Bowden, with the Down’s Syndrome Network Arizona, indicated they offered resources for parents as well. “We are planning a conference on ‘Aging with Down Syndrome’ in November. Anyone interested, can email http://info@DSNetworkAZ.org.
Dr. Marwan Sabbagh and his colleagues are interested in finding Down Syndrome individuals willing to participate in research trials. The goal is to find a way to better treat Alzheimer’s symptoms in Down Syndrome patients, and hopefully prevent the disease in all populations.
We, at One Step Beyond Inc., serve a population that includes many young adults in potentially susceptible to Alzheimer’s Disease. As partners in caring for your loved ones we can note behavioral changes for you, but we suggest you speak to your physician for valid medical advice early on about this connection.
I, for one, am ever grateful for Dr. Sabbagh’s and his associates’ work. It is professionals such as him that have the capacity, resources, and passion to tackle such complex medical conditions.
My younger brother had a stroke in September of ’15 and suffered significant memory disorder, from which he has now mostly recovered. I would have connected him with Dr. Sabbagh if I’d known of his reputation then. It is frightening to be concerned about any potential medical condition that may strike our loved ones. For this reason, I encourage you to talk to your circle of support and access the websites I’ve listed as resources. Knowledge is power.
Additional resources:National Task Group on Intellectual Disabilities and Dementia Practices, http://aadmd.org/ntg
My Thinker’s Not working: A National Strategy for Enabling Adults with Intellectual Disabilities affected by Dementia to Remain in their Community and Receive Quality Supports
Barrow Neurological Institute 602.406.6262
Susan Kavanaugh, the Director of Development for One Step Beyond Inc., advocates on behalf of her close friends, Randa, Girard, and Susan, all parents of adult children with Down Syndrome. Susan co-authored a book with Girard, called “Dyslexia, My Life.” She has written for numerous national health publications over the past 30 years.