Persons with Down Syndrome Face a 90% Lifetime Dementia Risk–A Reality of Aging That Must Be Addressed  

Joseph, a 45-year-old man with Down syndrome is brought to the emergency department (ED) after he and his mother fell down the stairs. In a phone call with his sister who lives in a distant state, ED staff learn that he lives in a two-story home with his 89-year-old mother who has severe osteoarthritis. He has worked at the local grocery store for 23 years bagging and gathering carts from the parking lot. He recently lost his job due to his inability to perform basic tasks he had performed for years. His sister notes that he previously sent birthday cards to each family member, but he stopped doing so consistently in the last few years. He has required greater assistance from Mom in daily self-care, but they have not been able to get additional assistance into the home. He recently developed clear problems with impulse control. At times, he is physically aggressive with Mom, and his gait has become unbalanced. His physician diagnosed him with Alzheimer’s dementia three months ago. In the ED, he is found to have bruises related to the fall, and his mother is diagnosed with a fractured hip.

Such cases may seem extreme. In fact, they are sadly common. Our team recently analyzed 133 million adult ED patient encounters across the United States. More than 500,000 of these encounters involved persons living with intellectual or developmental disabilities (IDDs). Indicated dementias among patients with Down syndrome between the ages 45 and 49 were more common than was observed in ED encounters in the broader population over age 70. More than one-third of ED visits among patients with Down syndrome ages 55-64 include dementia indications. 

More than one million Americans living with intellectual disabilities live with a caregiver—typically a parent-caregiver—who is over the age of 60. As parent-caregivers enter their own senior years, many of their children become vulnerable to early-onset dementia. Persons with Down syndrome now face a 90% lifetime dementia risk, usually acquired before age 65. Given this reality, people with Down syndrome who develop Alzheimer’s dementia are often cared for by their parents, as opposed to being cared for by their children, as is typical across the rest of the population.

The American public and policymakers readily overlook these challenges, as public discourse and policy conversation focus on (equally important) challenges facing children and young adults. Our society correspondingly neglects the clear need for improved clinical and service supports across the entire life course. These include supports for older-adult caregivers, supports for caregiver transition planning, and the design and proper funding of services for middle-aged and older adults living with IDD and facing sharply increased risks of dementia and related challenges.

Given the right staff trainings and supports, many middle-aged and older adults could be served in Community Integrated Living Arrangements (CILAs). These are group-home arrangements that house eight or fewer unrelated adults. For example, L’Arche St. Louis provides community-integrated living arrangements where people with and without intellectual disabilities live together in the same homes. Over the past year, a much-loved resident and founding member of the L’Arche community named Jim who lived with Down syndrome and dementia spent his last year of life in hospice in the home where he had lived and aged-in-place for 14 years. He died peacefully at 71, surrounded by family and friends.

With the right training, supports, and funding, more persons with intellectual disabilities like Jim could be supported to age-in-place in familiar environments, within their own communities. Others could age-in-place in their own family homes. For this to be feasible, family caregivers must be properly equipped and supported in assuming these responsibilities and burdens. Under both models, it is important to provide intentional mentoring and support to prepare all paid and unpaid caregivers for demanding challenges in supporting a resident or family member who faces the challenges of older adulthood, including life’s final stages.

In 2023, the Centers for Medicare and Medicaid Services (CMS) launched the Guiding an Improved Dementia Experience (GUIDE) program to improve care and services provided to Medicare (and Medicare/Medicaid dual-eligible) recipients living with dementia and their caregivers. This July, CMS approved the first 330 organizations to participate. Financed through a monthly per-beneficiary payment, GUIDE includes specific focus on persons living with Alzheimer’s and their caregivers. The initiative seeks to connect caregivers with a standardized collaborative care model that includes caregiver training regarding matters that range from assistance with activities of daily living (ADLs) to management of challenging behaviors that can accompany dementia, a 24/7 support line, and respite services.

Such efforts provide a valuable starting point. Greater resources are needed. Health systems, even those that routinely serve young persons with IDDs, prove notably slower to serve people with intellectual disabilities who experience dementia than they are to serve others with dementia.

Improved services also require access to nursing home care when persons with co-occurring dementia require more intensive supports. Waiting times for nursing home spaces are often prohibitive when persons are in rapid decline with early-onset dementia.

To meet these needs, nursing homes require education and outreach on rules regarding accepting patients with IDD and co-occurring dementia. Respecting norms against needless institutionalization, nursing homes have strong justification not to admit (for example) a 20-year-old with Down syndrome and no specialized care needs. In contrast, a 45-year-old with Down syndrome and early-onset dementia is often an appropriate candidate for admission. Nursing homes must be available, ready, willing, and able to properly care for this patient population.

We must also ensure that primary care providers are properly trained to help families with these challenges. This requires funding, quality incentives, and other strategies to increase provider uptake for pertinent training. The need for incentives is particularly great given the reality that older persons with Down syndrome and co-occurring dementia are a small fraction of most providers’ medical practice.

Patients and providers require further supports to ensure timely access to specialty care. Across America, many patients must travel long distances to see providers with pertinent expertise in neurology and other specialties. Improving the logistics of virtual appointments provides one useful response. Patients and providers may benefit from care arrangements that allow video conferencing with neurologists and other specialists at regional centers of excellence to address specific care challenges. Such arrangements require measures to ensure that licensure keeps up with the new realities of virtual care, including the need for supports for patients and providers across state lines.

Care systems must also earn legitimacy with families. It is easy to argue that caregivers must plan ahead to address realities of human aging. Yet it is often an elderly parent who has struggled to get services that treat their loved-one and their family with dignity and respect. Given such experiences, many parent-caregivers are understandably reluctant to “release” their loved-one into the care system, let alone to address sensitive issues such as advanced care directives for a loved-one experiencing early-onset dementia.

The IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading) project offers valuable recommendations to address these challenges. For example, IDDEAL recommends co-location of physical and mental health care, social services, housing, and vocational services. Watchman and colleagues (2019) and Moro, McGinley and Ewald (2025) offer other valuable recommendations regarding individualized supports, and describe dementia-capable care practices designed for persons living with IDD and their caregivers.^1,2

Improved care also requires specific attention to the bifurcated funding streams for services financed through Medicare and Medicaid. Many adults with IDD, particularly those living with older-adult caregivers, are dually-enrolled in Medicare and Medicaid. This is a great financial help in providing access to health care, housing, and home and community-based services (HCBS). Yet the fragmented nature of these programs—e.g. hospitals and doctors paid by Medicare; nursing homes and CILAs paid by Medicaid—creates myriad navigation and coordination challenges for recipients and their families.

The emergence of integrated care plans (ICPs) provides one promising strategy to address these challenges. ICPs integrate and align Medicare and Medicaid benefits under the same managed care plan and parent organization, such as fully-integrated dually-eligible special needs plans. Such ICPs have particular potential to benefit persons living with IDD, integrating and coordinating Medicaid-financed HCBS and long-term disability services with Medicare-financed medical care. Delivering on this promise requires strengthening the evidence base regarding the impact of such plans for enrollees, and addressing general skepticism regarding the use of managed care plans to serve this vulnerable population.

Non-Hispanic White Americans with Down syndrome now have an expected lifespan of 60, with slightly lower life expectancy among Black and Hispanic Americans with Down syndrome. Most Americans with Down syndrome, and most Americans living with other IDDs, can now be expected to outlive their parents and other primary caregivers. Most will experience significant, often-accelerated infirmities that accompany human aging. Many will experience these infirmities while living at home with their parents or other older-adult caregivers. Americans with disabilities and their families require better supports to meet these challenges. This requires our culture, our care systems, and our public policies to keep pace with the realities of human aging.

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