It often starts with something small. A subtle decline in speech. A sudden difficulty following instructions. An abrupt change in behavior that just doesn’t feel quite right.
These changes can be easy to overlook, especially for individuals with intellectual and developmental disabilities like Down Syndrome, where signs of dementia may appear muted or mistaken for other conditions. Given their significantly higher risk of developing dementia with age, early recognition by caregivers is essential.
Recognizing dementia in people with I/DD requires more than surface-level observation. It means knowing what’s typical for that person, tracking changes over time, and understanding the difference between a lifelong disability and a new cognitive decline. It takes informed caregivers, intentional collaboration, and the right tools to guide the process.
That’s where MOKA stepped in.
Fueled by a grant from The Wege Foundation, MOKA launched a targeted initiative to improve early dementia detection and care for individuals with I/DD. We began by training staff with the NTG Early Detection Screen, helping identify changes in a person’s baseline abilities. Through partnerships with providers like network180, we integrated screening prompts into electronic health records and educated referral sources—most successfully with the Down Syndrome Association, support coordinators, and Adult Foster Care Providers—to encourage earlier identification.
To support caregivers, The Alzheimer’s Association offered educational opportunities to 100% of those caring for someone with symptoms or a diagnosis. Adult Foster Care teams were the most active participants, and materials were also shared with supports coordinators and families. These efforts paid off: 92% of caregivers showed increased knowledge after training, and every individual screened received follow-up resources tailored to their needs.
Together, these actions led to better collaboration, more timely referrals, and strong satisfaction from partners—94% reported positive outcomes. What began as subtle, hard-to-spot signs has now grown into a coordinated system of early recognition, strong support, and shared responsibility. With continued education and collaboration, MOKA is helping ensure that people with intellectual and developmental disabilities are seen and supported as they age.
