About CARE

About CARE

CARE is a community academic network mobilized to increase awareness about brain health and Alzheimer’s Disease and related dementia among African Americans/Black adults 45 years and older. It consists of faith/community-based organizations, education, healthcare providers, health and human services organizations, dedicated volunteers, and Indiana University researchers.

One effort facilitated by CARE is a community driven research project focused on designing, developing, and evaluating a dynamic multimedia information sharing electronic platform called the CARE Platform. Funded by the National Institutes of Health’s National Institute of Aging, the development of the CARE Platform is rooted in listening to community voices about their interest and experiences in living well and aging well. It is not a medical or clinical trial. As a network, we gather information through community surveys and convene community discussions. We listen to input and feedback from African American/Black adults about what they would like know about brain health, Alzheimer’s Disease, and dementia. The data and information are gathered from surveys and interactive research opportunities and will be used to create a product or a series of products to:

  • Increase awareness and knowledge about brain health, especially among African Americans/Black adults 45 years older
  • Create a central clearinghouse or a “one-stop-shop” of community resources focused on brain health and Alzheimer’s Disease and related dementia
  • Share easy to understand information about other Alzheimer’s Disease and related dementia studies – including clinical and medical trials, survey-based research, or community focused research

Our goal is to make sure that African American/Black communities are informed and inspired to increase their increase knowledge about brain health and Alzheimer’s Disease and related dementia.

 

For far too long, folks within the black community have felt that Alzheimer's and other health problems should be kept a secret within families. However, that practice has kept many people away from the help that they desperately need. It's my hope that by participating [in CARE], that we are able to reach more individuals in small group settings… [w]hich in turn will have a ripple effect[,]allowing us to touch the lives of caregivers and families within the black community who are facing this horrific disease head on. …[M]y main goal for participating with the CARE team is to have less folks feel alone in their fight against Alzheimer's and dementia!!! We can do way MORE TOGETHER than we can ever do separately!

Angela Relaford
Lake County, Indiana Alzheimer’s Association Walk Chair
Volunteer of Alzheimer Association Greater Indiana Chapter

Why CARE?

As the aging population increase, the number of Americans aged 65 and older is projected to more than double by 2060 (24% total population: over 98 million). Racial/ethnic minorities will make up the largest segment (over 40%) of the older adult population by the year 2050. An ongoing challenge in aging research is the continued gap in awareness and knowledge about brain health, Alzheimer’s disease, and related dementia. Middle aged racial/ethnic groups start at a high level of chronic disease burden at an earlier age, on average than their whites counterparts. Differences in health literacy between racial/ethnic minorities, may place them at a greater risk of not recognizing signs and symptoms related to Alzheimer’s disease and related dementia (ADRD).

The development of culturally relevant evidence-based information is critical in increasing awareness and knowledge about ADRD. The importance of culturally relevant brain and ADRD health literacy for African Americans adults/older adults has received increasing attention. Over 50 million American minorities lack the ability to understand and use brain health and ADRD related information, and this can expose them to higher health risks and less access to health services and health related research activities.

CARE is rooted in community-informed approaches addressing existing disparities in health and healthcare research. It is supported by a multidisciplinary team comprising of researchers and practitioners from Indiana University and the Alzheimer’s Association. CARE’s first research initiative, the CARE Platform, aims educate and engage African Americans/Black adults in clinical research about brain health, Alzheimer’s Disease, and related dementia using technology. Together, our goals are to:

  • Develop culturally relevant content for the CARE Platform that informs African American/Black adults (45 years and older) about brain health and participation in clinical ADRD studies.
  • Develop the CARE Platform that delivers culturally relevant content about brain health and ADRD and connects African American/Black adults who are interested in clinical ADRD studies.
  • Evaluate preliminary impact of the CARE Platform on increasing brain health and ADRD health literacy.

"Creating authentic partnerships involving volunteers and residents will facilitate the reduction of barriers in ADRD study enrollment and will help us effectively communicate the benefits of participating in Alzheimer Disease events, programs, and research."

Dr. Priscilla Barnes
Associate Professor at Indiana University School of Public Health Bloomington