During the Alzheimer's Impact Movement Advocacy Forum, I had the tremendous privilege to testify before the Senate Special Committee on Aging. During my testimony I spoke on behalf of the 5.8 million Americans including 280,000 Pennsylvanians living with Alzheimer's disease and especially underserved populations.

Among the millions of individuals living with Alzheimer's, we know that there are communities who are disproportionately affected but remain underserved. Older African Americans are approximately twice as likely to have Alzheimer's or other dementias as older whites, and older Hispanics are about one and one-half times as likely to be affected.

Another population that is often under-recognized and underserved is the approximately 200,000 individuals under age 65 who have younger-onset Alzheimer's disease. In Pennsylvania, we are aware of the unique challenges of younger individuals with Alzheimer's and have developed and implemented a variety of programs in response. We offer early-stage education and support groups throughout the Commonwealth and promote social engagement in local communities by partnering with museums, local tourism boards, and libraries. We also work with the Pennsylvania Department of Aging to train facilitators for memory cafés.

In spite of these efforts to support this population, however, we know that they simply do not have access to many of the services they need. That is why the Alzheimer's Association and AIM are strong supporters of the Younger-Onset Alzheimer's Disease Act (S. 901/H.R. 1903). The legislation would allow individuals under the age of 60 living with Alzheimer's disease to access supports and services from programs under the Older Americans Act (OAA). Those programs include supportive services and respite care through the National Family Caregiver Support Program.


To further reach members of under-represented and underserved communities, the Alzheimer's Association has undertaken several recent initiatives. We are recruiting volunteers to engage with faith and Spanish speaking communities. The Association is partnering with the Mexican Consulate to engage the Hispanic and Latino communities with information on Alzheimer's detection and diagnosis, care, treatment, research, and access to culturally-appropriate resources. In collaboration with the National Hispanic Council on Aging, the Alzheimer's Association will also build a network of "promotores,” or community health workers, who deliver Alzheimer's education in Latino communities and help connect people to resources and services in Spanish.

We're also working to conduct faith-based outreach and community education, are coordinating with the local Area Agencies on Aging to reach Chinese, Korean, and Vietnamese organizations, and are expanding our reach into rural communities to ensure all individuals and communities have access to critical resources to help navigate this devastating disease.

You can read my full testimony and learn more about our efforts to reach underserved populations here.