14 Down Syndrome & Alzheimer's: Some Unmet Needs

Jadene Sloan Ransdell

February 9, 2026

What follows is the written public comment I submitted to the National Alzheimer's Project Act (NAPA) Council that met in Washington DC on February 9, 2026. It was the first meeting of the council in more than a year, and I was asked by the National Down Syndrome Society to provide public comment regarding issues around diagnosis and support for our people with Down syndrome and Alzheimer's, and their families.

My name is Jadene Ransdell, and I am a family and disability advocate. I began my advocacy work when my son, Matthew, was born with Down syndrome nearly fifty-two years ago. The focus of my efforts for the past twelve years has been to support families who have loved ones with Down syndrome and Alzheimer’s. As I listen to, and advocate for these families I learn of their deepest concerns.

Two that repeat often are diagnosis and support.

In the general population, there are screening tools and assessments that can be used to identify dementia. That is not the case for people with Down syndrome. As a result this continues to be a challenge we face, and it can be distressing on both ends of a continuum.

Lack of effective tools to accurately diagnose Alzheimer’s results in young people, some in their twenties, receiving an incorrect diagnosis. My son was a victim of this. He exhibited some changes in his behavior, as well as his energy and stamina. For instance, he had begun wanting to leave work earlier than usual, he had gotten confused helping with his laundry, and he was experiencing bouts of afternoon agitation. With that little bit of information the doctor proclaimed, “Well, Matt is nearly forty, he has Down syndrome, so it’s obvious that he has Alzheimer’s.”

With no discussion about other possible causes for those changes, Matt received a diagnosis of a terminal disease. A diagnosis I was not ready to hear. A diagnosis that was to change his life and mine. He was just thirty-nine years old.

It has been twelve years since that appointment. I lived many of those years in dread of Matt declining and eventually dying. But he did not decline. In fact we (his dad, his staff and I) figured out that he was having an adverse reaction to a new medication. It took us about six months to realize the changes coincided with this new prescription and increases in the dosing. I insisted the medication be discontinued and in a few months Matt was acting more like himself.

About two years ago, at forty-nine, he had several tonic-clonic (grand mal) seizures, a red flag for Alzheimer’s in people who have Down syndrome. His sleep patterns have begun to change, and he naps frequently when he used to be like the Energizer bunny! He has lost interest in many of his preferred activities, has had episodes of choking and a few incontinence issues. The timing of these changes is more in line with what doctors who specialize in the care of adults aging with Down syndrome see when Alzheimer’s is present. I am still not ready for this diagnosis because I know where it leads. However, Matt’s age makes it more probable that it is accurate now, especially since we regularly monitor other aspects of his health.

Currently, I am authoring a book about Down syndrome and Alzheimer’s from the perspective of families. It is not an academic manuscript but one filled with their life stories. And while we were on the wrong path for many years, I know that some families have quite different experiences.

While we suffered through a premature diagnosis, other families never get the diagnosis they so desperately need even when they are in the throes of the disease. Some doctors downplay concerns about changes the families notice. They attribute everything to the primary diagnosis of Down syndrome, or worse, do not address the changes. Some families have told me they were frustrated because they knew something was going on but could not get anyone to pay attention. Sadly, I am learning that too many people (families, service providers, and even medical providers) are not aware of the high risk our loved ones have for Alzheimer’s because of that extra twenty-first chromosome.

The ability to make an accurate diagnosis is essential for our loved ones. I now know that there are many conditions that can present symptoms that appear to be dementia related. Many of these conditions are treatable and some are even reversible. Getting a premature diagnosis robs families of hope for the future. And getting no diagnosis can be detrimental if Alzheimer’s is taking its toll. Having effective tools to accurately diagnose is vitally important, and I am pleased to say that the National Down Syndrome Society (NDSS) is currently advocating for improvements in this area.

Support issues are another big concern. That can be broken down into three areas, education and awareness, community services, and emotional support.

First is education and awareness. While those of us who are in advocacy roles are keenly aware of the connection between Down syndrome and Alzheimer’s, many medical providers, community service providers, and our families still do not know that fact. It is important that medical personnel understand the connection between Down syndrome and Alzheimer’s disease, as well as the clinical signs that present in our loved ones (often different than for the general population). They also need to know what steps to take for a differential diagnosis to rule out other causes of reported changes. Our community service providers need to know the signs to monitor. Better, targeted training will help them to provide the day-to-day support many of our loved ones need. The staff who work with my son have frequently asked me for information so they can better support him. While people who work with the elderly have access to dementia care training, it is not widely available to staff in the developmental disability field. The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) has dementia capable care training that has been offered around the country, and they have partnered with the National Association of Direct Support Professionals (NADSP) to develop a specialized certification for staff in developmental disability programs. Aging in place could happen more frequently and at less cost to the government if the staff working with people like Matt were confident in their skills to provide appropriate care.

And families need access to similar training and information. I am happy that the NTG and NDSS, as well as the Adult Down Syndrome Clinic in Park Ridge, Illinois, have excellent, up-to-date resources. NDSS has also developed a new program called CARE DS that provides free online training and resources for physicians. Sadly, not enough people are aware that these resources exist. It is important that these organizations get assistance to increase awareness and availability of their training to medical providers, direct care professionals and families who care about people aging with Down syndrome and Alzheimer’s. 

Community services sometimes fall short for our loved ones. Programs established in our communities to serve the general population often are not available to people with similar needs who happen to also have Down syndrome. Alzheimer’s programs are often funded to serve those above a specific age, a disqualifier for most of our loved ones. Community services specific for those with developmental disabilities have been focused on achievement and growth. Guidelines do not adapt for those whose skills are declining and whose care needs are increasing. Although service providers may want to continue to support people with Down syndrome who are declining because of their Alzheimer’s diagnosis, the funding stream does not support them to do so. When the time comes that the family or the community service provider can no longer support the individual in their current living arrangement, long-term care facilities sometimes shut the door as they do not serve people with Down syndrome (it can be an age issue as well as an issue of misinformation about their needs). Attempts for elder and developmental disability programs to collaborate at a state level often fail because of requirements set by federal funding streams and state rules. We need to find ways to allow state agencies who provide similar services to the elderly and those with developmental disabilities to collaborate.

Finding others who understand a caregiver's journey is a challenge in meeting the emotional support needs of family caregivers. Too often, support groups are geared toward spouses and children responsible for their aging loved ones. While there are similarities in the emotional needs of caregivers, there are some unique aspects to the Alzheimer’s journey with Down syndrome. One of the most heartbreaking parts of Matt’s diagnosis was the realization that skills he worked extremely hard to achieve would be lost. I was the person who helped Matt learn many of those skills. He did not walk until he was three years old; he was not toilet trained until he was nine years old. I am crushed because I am aware of the tremendous challenges he overcame to acquire skills many of us take for granted, and that in time they will be wiped out of his memory. People with Down syndrome and Alzheimer’s may be cared for by elderly parents, some of whom may themselves have significant health issues and possibly dementia. Oftentimes, siblings have taken on the responsibility after their parents died or are no longer able to provide the strenuous, full-time care.

Shortly after Matt’s premature diagnosis, I created an online support group on a popular social media platform for families and others who care for people with Down syndrome and Alzheimer’s. I knew the value of peer-to-peer support from years earlier when I was part of a parent-to-parent program. The online group now has more than 1,400 members and many report that connecting with others who are on this same journey has been a lifeline for them. As a member of the NTG, I helped to create another online support group that continues to meet monthly. There have been a small number of groups around the country that grew out of the NTG family support group; however the number of caregivers whose emotional support needs are being met is still quite small. One of the issues we have found is that services are quite varied from state to state, and we know that connecting with others at a more local level goes a long way in building confidence and increasing skills. I am, as well as NDSS and the NTG are eager to work with others to create more state and local support groups that can answer questions and concerns for families. Two other family members and I have recently begun a new podcast that addresses aging with Down syndrome issues. The feedback we are receiving is overwhelmingly supportive and filled with gratitude as many listeners are desperate for information related to aging and the journey with Alzheimer's. It is important that resources are made available to community non-profits, such as local Down syndrome affiliates to provide more information and support to families whose loved ones are aging and developing Alzheimer’s. This is a journey we should not have to do alone.

My request of this council is to promote opportunities to:

•        Develop and validate effective tools to accurately diagnose Alzheimer’s disease in people with Down syndrome.

•        Assist organizations to increase awareness and availability of training opportunities for medical providers, direct care professionals and families who care about people aging with Down syndrome and Alzheimer’s. 

•        Allow state agencies who provide similar services to the elderly and those with developmental disabilities to collaborate.

•        Establish and target funds to help community non-profits to enhance their programs to include services and supports to families whose loved ones are aging with Down syndrome and Alzheimer’s.

NDSS publications: ttps://ndss.org/resources?topical=49

NDSS CARE DS: https://ndss.org/resources/care-down-syndrome

The NTG: https://www.the-ntg.org/

Adult Down Syndrome Clinic Resources: https://adscresources.advocatehealth.com/resources/

Aging with Down Syndrome Podcast: https://www.agingwithdownsyndrome.com/podcast