Aging & Dementia
Organization Spotlight: The National Task Group (NTG) on Intellectual Disabilities & Dementia Practices
By Seth M. Keller, MD
People with Intellectual and Developmental Disabilities (IDD) are living longer than ever before. Over the past 50 years, there have been a growing personal, social and cultural awareness and sensitivity to the rights and needs for those with IDD and to those that support them throughout their lifetime.
Growing older allows all of us to enjoy life as it unfolds and to gain from it as much as we can. We can all appreciate that aging also will have an impact upon us physically and mentally. One aspect of aging is how our minds will change. Short-term memory and the ability to pull out of our minds information that is stored will naturally be slower, which is all a part of the normal aging process. We even have an expectation of what the aging process is like, based on these experiences and knowledge “normal” aging.
But what of those who have had a life-long disability, and what of those in particular, who have Down syndrome? What do we expect for them as they grow older? Supporting people with IDD has always focused on early intervention, but the focus on adult care and supports, and in particular on geriatrics, has not gained attention until very recently. This absence of awareness has led to a tremendous amount of ignorance as to what the aging process is like and on how to best support it.
The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) was created in 2010 to fill in the wide knowledge and supports gap which had existed until that point. Individuals, their families/caregivers, support organizations, and healthcare supports, all were in the dark when decline of function began to occur—specifically, what to do, how to provide assessments, diagnostics and care, especially if Alzheimer’s disease (AD) was found to be the cause of the decline. This tremendous lack of supports leads to a great level of frustration, uncertainties, and often significant turmoil as the progression of the disease continues, ultimately leading to a tragic end…death.
Many people with IDD who have had some degree of a baseline cognitive or intellectual dysfunction throughout their lifetime, will most notably also have additional normal cognitive decline as they age. This decline may be subtle and some may not be so. The ability to know the change is part of the normal aging process or a sign of an illness or disease, including Alzheimer’s disease or some other form of dementia which may be very difficult to determine. People with Down syndrome have a very high risk of developing early onset AD due to their genetic predisposition of having an extra copy of chromosome 21, which leads to an early accumulation of beta amyloid protein in the brain. This protein is thought to be one of the main contributors leading to AD. People with DS will develop AD, with some estimates as high as 60% by age 60.
The NTG needed to ensure it had the expertise and dedication of its leaders to be able to provide the much-needed level of education, training and supports. We absolutely needed people who had a personal vested interest in the issues at hand. Family advocacy has become a prominent part of the NTG.
We were thrilled to meet Marianne Barbera, who has been involved in special education and supporting her aging father, as well as her sister with Down syndrome. Nothing prepared her for when her sister began to show signs of decline.
Marianne’s story about her sister, Susan, is very similar to many others who were shocked and dismayed about the decline and the realization of what came next. Many families and caregivers across the country and around the world who support individuals aging with IDD, and in particular DS, will often face some level of decline of function.
The NTG will help to provide the much-needed education, training, and advocacy that is sorely needed, as there are significant barriers and ongoing disparities that remain. Working together with national, state and local I/DD and aging organizations is instrumental in being able to help further along the important care and supports required—as the number of individuals with age-related decline and dementia increase. We personally appreciate the issues, and are sensitive to the needs and concerns that aging has to those with IDD and especially those with Down syndrome.
About the Author
Seth M. Keller, MD is a board-certified neurologist in private practice with Neurology Associates of South Jersey. He specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (IDD) with neurologic complications. Dr. Keller is on the Executive Board of the Arc of Burlington County, as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board. Dr. Keller is the Past President of the American Academy of Developmental Medicine and Dentistry (AADMD). He is the co-president of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG).