The Dementia DataHub: A Powerful New Tool for Understanding Alzheimer’s and Dementia

An estimated 6.9 million Americans are living with Alzheimer’s disease and related dementias. Yet the detailed demographic information that could help in better understanding the disease has been difficult to find. What do those affected have in common? How do services differ among communities? Are there patterns that could help doctors and caregivers provide better support?  

 

The Dementia DataHub, launched in September 2024 by NORC at the University of Chicago, seeks to provide those answers. This first-of-its-kind online tool collects and shares critical data about Alzheimer’s disease and related dementias (ADRD), helping researchers, healthcare providers, and policymakers better understand and respond to this growing health challenge. 

 

Why It’s A Game Changer 

Dementia is more than just memory loss – it affects language, thinking, movement, and daily function, eventually leading to the need for full-time care. It’s a condition that requires comprehensive planning and support, but until now, there has never been a national system tracking where and how dementia affects people across different states, counties, and communities. The Dementia DataHub fills that gap. 

 

How It Works 

The Dementia DataHub gathers information from Medicare records to estimate how many people are diagnosed with dementia in different areas. Because Medicare covers most adults over 65, these records provide a highly accurate picture of dementia trends across the country. However, many people with dementia go undiagnosed, so researchers have developed better ways to estimate the true number of cases –including those that may have been missed. 

 

The DataHub offers:  

• Interactive Maps – Showing dementia rates at national, state, and county levels  

• Trends & Statistics – Helping researchers understand how factors like geography, income, and healthcare access impact dementia  

• Research Tools – Providing valuable data to improve dementia care and planning 

 

How It Helps Families  

While the Dementia DataHub is designed for researchers, healthcare providers and policymakers, its impact will be felt in the programs, services, and resources that affect us all. By providing a clearer picture of dementia across the country, the DataHub helps: 

 

• Guide funding and resources to the areas that need them most 

• Improve early detection and diagnosis by identifying gaps in care 

• Inform policies and programs that provide better support for families navigating dementia care 

 

Tools like the Dementia DataHub help ensure that the research shaping dementia care is backed by the most accurate data available – leading to better services, improved access to care, and a stronger support system for families like yours. 

 

Let us help your family member find the memory support they need today. Find an Elegance community and schedule a tour. 

 

 

Source: NORC’s Dementia DataHub.