Providing HOPE is one of many goals of the Boston University Alzheimer’s Disease Center (BU ADC). We hope to find a cure for Alzheimer’s disease and inspire others to believe that there is hope in finding a cure. Without research participation, the BU ADC could not perform its cutting-edge research that is so desperately needed to cure Alzheimer’s and help those with the disease.
HOPE is also an acronym for the main registry for participants in the BU ADC. HOPE stands for Health Outreach Program for the Elderly. People who join HOPE attend a yearly visit in which their memory and thinking abilities are evaluated. They also participate in other BU ADC-affiliated studies. Interested volunteers may join this important registry if they can attend a yearly visit with a study partner and are age 65 or older with or without memory concerns, or are age 50 or older with memory concerns.
Charlene Francis is a participant in our HOPE study and also serves on our Community Action Council. Ms. Francis has been enrolled in the HOPE study for 11 years. She was motivated to participate in research because her mother had passed away from Alzheimer’s disease in 2005. “By participating in HOPE, I learned that as you age things happen to you, and the HOPE team explains why there are changes and clarifies what is normal aging and what is not. Fear is still in the back of my mind, but by participating I gain knowledge about the signs and symptoms. I am then able to educate my friends and family,” said Ms. Francis.
Ms. Francis wants to help increase understanding of Alzheimer’s disease for the African American community. Ms. Francis states, “Community members have seen their loved ones age and may think it is ‘normal’ aging or think their loved one is just ‘senile’ if they don’t understand the disease.” The Alzheimer’s disease label can be very frightening, particularly if it is not well understood the first reaction is to not believe it or understand it. A person wants to know answers to questions such as, is it inherited, and does it happen to all old people? “
By participating in research, individuals will not only play an important role in helping find a cure and prevent for Alzheimer’s Disease in the future, but they will also gain a better understanding of the disease. Research participation fulfills that most important need for everyone touched by the disease: a sense of hope.
This article was first featured in the Boston University Alzheimer’s Disease Center quarterly publication. Read the full newsletter here: BU ADC Summer 2015 Newsletter