Lois Williams-Norman has been a board member of the Alzheimer’s Association, Rochester and Finger Lakes Region Chapter for the past 10 years. She initially joined the Alzheimer’s Association board as part of the finance committee because of her extensive background in finance. With a board of 21 members, Williams-Norman currently holds the Diversity & Inclusion Committee Chair position.
Williams-Norman normally chairs the committee meetings where they discuss and plan events to create more awareness of Alzheimer’s and other dementias in different communities, including the African-American community, the Latino community, and the LGBTQ community. “We just recently had the African-American Health Symposium at the Mt. Olivet Baptist Church, which was very well attended,” says Williams-Norman.
“We do try to reach out to communities we have identified as being underrepresented and perhaps underserved. Especially, we look at participation of diverse families in the programs and services that we provide,” Williams-Norman noted.
Her Personal Story
Williams-Norman’s strong advocacy for the Alzheimer’s Association is very personal. Both of her parents suffered from the disease.
In 2007, her father was diagnosed with cognitive impairment, one of the diagnoses that are often given to people who actually have Alzheimer’s. Williams-Norman shares, “I knew that I had a lack of understanding of the disease and even awareness of really how to deal with the symptoms and cope with them.”
The family initially relied on additional support from a home-care agency as none of her siblings lived in close proximity to her parents.
“My mother, you know, who is somewhat controlling tried to limit the support that at-home aides provided, really feeling a high level of or sense of duty that it was her role as the spouse to help with my dad. As a result of that, she became ill as well,” Williams-Norman recounted. “His ability to speak was compromised, his ability to eat was compromised, he couldn’t swallow at a certain point, and he lost his ability to walk.”
Williams-Norman’s father passed away from the disease in 2013.
Her mother is now affected by the disease as well. Williams-Norman shared that her mother’s symptoms are somewhat different than her father’s—she is still fairly functional; however, her memory is severely impacted.
“So, seeing this impact on both of my parents really has instilled in me a desire to do everything I can to make sure families in the African-American community don’t deal with this disease on their own,” Williams-Norman says.
When it comes to Alzheimer’s and other dementias in the African-American community, families rarely seek help. Williams-Norman stated, “I think that for African-Americans, some things are cultural in terms of the reluctance to seek support and treatment for mental health issues, as well just a reluctance in our community to admit that those issues actually do exist… And in some cases, there is a lack of awareness of the support and services that are open for us to take advantage of and, in some cases, the lack of trust in institutional support.”
More African American Participation
“I’d like to see more African Americans be directly involved in helping others cope with this disease. African Americans need to realize that there shouldn’t be any shame in admitting that they are dealing with the impact of the disease,” Williams-Norman says.
The local chapter of the Alzheimer’s Association is always looking for participation from the community. Donations and volunteering are just a couple of ways in which to participate. Williams-Norman shares, “I’d also like to see more participation in the research that’s being done to find a treatment and a cure for the disease, and to promote earlier detection. I hope that I can we have the first survivor in my ifetime!”
The association has a trial match process where Williams-Normans states that individuals are invited to sign up to participate. “It doesn’t mean that you are necessarily going to be called on to participate in the trials, but it creates a database of potential participants and, of course, anyone would have the option to opt out of any trials that they may be selected for.”
She notes that active participation in the trials would be very beneficial.
“There are trials that go on in the Rochester community and there also trials that can be done remotely,” she shared.
The Alzheimer’s Association continuously looks to host events to increase awareness of Alzheimer’s and other dementias, as well as of the resources that they offer.
The main office of the Alzheimer’s Association, Rochester and Finger Lakes Region Chapter is located at 435 East Henrietta Road, Rochester New York 14620. For additional information regarding the services that the Alzheimer’s Association provides, visit www.alz.org or call the 24/7 helpline at 800.272.3900.
“I hope that we have the first survivor in my lifetime!”