DAWN Alzheimer’s Research Project
Alzheimer’s disease (AD) is a condition that deeply affects many lives, and sadly, minoritized groups are more at risk. African Americans are nearly twice as likely to develop Alzheimer’s as non-Hispanic whites-yet are delayed in getting a diagnosis, have worse overall outcomes, and remain underrepresented in crucial AD research. This gap makes it harder to find answers that could help improve care and treatment for everyone, that’s why we need your help. By joining the DAWN Alzheimer’s Research Project you’re helping pave the way for better treatments and medicines that truly reflect and benefit those most at risk.
Alzheimer’s disease is the most common form of dementia, a brain disorder that slowly destroys a person’s memory and thinking skills. It is characterized by a loss of cognitive functioning — thinking, remembering, and reasoning — and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Eventually, people with Alzheimer’s lose the ability to perform simple daily tasks, such as eating or walking. For most people with this specific type of dementia, symptoms first appear in their mid-60s.
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, at work, or leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality
For resources like the national Alzheimer’s Hotline visit www.alz.org
Why Should I Join?
African Americans are twice more likely to develop Alzheimer’s Disease than any other ethnic group in America
Who Can Participate?
- Male or Female of African Ancestry
- Individuals 60 years of age or older
- Suffer from memory loss, Alzheimer’s disease or dementia, OR be a healthy volunteer
What is Involved?
- Consent for medical research
- Blood draw
- Basic demographic information
- Share family and medical history
- Questionnaires on memory, thinking and mood
For more information about the DAWN Alzheimer’s Research Project and the Family Based Study please contact:
Takiyah Starks
Takiyah.Starks@advocatehealth.org
336.713.7611
Brain Tissue Donation
Did you know that Alzheimer’s disease (AD) can’t be diagnosed for certain until after death? Looking at brain tissue of someone who has died with clinically diagnosed Alzheimer’s disease is critically important for research. And being represented in such research is vital. But while African Americans are almost twice as likely to develop AD as non-Hispanic whites, they are woefully underrepresented – making up only 2% of brain donations. Our team collaborated on a study to understand attitudes and perceptions that influence brain donation among African Americans. Survey results revealed that only 27% were willing to donate, but medical mistrust was not a significant barrier. To discover what was hindering participation, a focus group study was conducted. The findings from focus groups conducted last year in Florida, New York, North Carolina, and Ohio included that:
- Most thought it was covered by organ donation through one’s driver’s license, it is not.
- Most thought it was disfiguring. They thought that they would not be able to have an open casket funeral, you can.
- Few had been approached about brain donation, but most were open to learning more about it.
- Religion was not a significant barrier to donation.
For more information please contact:
Dr. Allison Caban-Holt
Allison.Cabanholt@advocatehealth.org
336-716-7919
Dr. Persis Ayeh
Ayeh.Persis@advocatehealth.org
336.716.7922
North Carolina Registry for Brain Health
The NC Registry for Brain Health is a statewide initiative connecting adults in North Carolina to research and resources aimed at improving brain health and understanding dementia.
The Registry is the first registry of its kind in North Carolina, designed to increase awareness of Alzheimer’s disease and related dementias while connecting residents to research opportunities.
It is open to all adults aged 18 and older, including those with memory problems and those who are healthy. Participation is free of charge and involves receiving updates, resources, and information about local research studies.
Benefits of Joining
- Stay informed: Participants receive a welcome email and a quarterly newsletter with the latest brain health research.
- Access to research opportunities: Members can learn about studies at institutions such as Duke University, East Carolina University, North Carolina A&T State University, UNC Chapel Hill, and Wake Forest School of Medicine.
- Support for caregivers: The registry provides resources and information to help those caring for individuals with memory disorders.
How to Participate
- Visit the official website: https://ncbrainhealth.org to sign up ncbrainhealth.org.
- Provide basic information to join the registry.
- Receive updates and notifications about research studies and brain health resources.
For more information please contact:
Dr. Kelvin Lamonte Williams
Kelvin.Williams@Advocatehealth.org
919-394-6180
Brianna Eley
Brianna.Eley@Advocatehealth.org
336-713-7613