On May 17 and 18, the Alzheimer’s Association will be hosting its annual AIM Advocacy Forum, the nation’s premier Alzheimer’s disease advocacy event. This year, due to COVID-19 restrictions, the annual event will be held virtually. Hundreds of Georgia advocates will be meeting with members of Congress, advocating for:
- $289 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH).
- The Alzheimer’s Caregiver Support Act (S. 56/H.R.1474) would provide grants to expand training and support services for unpaid caregivers of people living with Alzheimer’s disease and other dementia.
- Funding the BOLD Infrastructure for Alzheimer’s Act by $20 million.
- The bipartisan Comprehensive Care for Alzheimer’s Act (S. 1125 / H.R. 2517) that would ask the Center for Medicare and Medicaid Innovation (CMMI) to test a different payment structure for dementia care management.
Albany resident and Alzheimer’s advocate, Shonda Bell will be attending this year’s AIM Advocacy Forum for the first time. This past year, she has worked closely with Representative Sanford Bishop, GA-02, who was among the first 25 cosponsors of the Alzheimer’s Caregiver Support Act.
“I became an advocate because I wanted to learn all I could about the disease and I wanted to implement change. I have learned through advocacy that in order to get the things we need to make life better for people living with dementia and their caregivers, we must work together with those in office. It has been an honor to build a relationship with Rep Sanford Bishop. I fully understand that building a relationship with a person in position to make decisions and offer help to my cause will be a very important part of my work as advocate”.
For Shonda, this event and her year round advocacy work is very personal. We are honored to share her story.
Shonda has been a caregiver for more than five years, caring for both of her parents, Charlie and Walter Cross. Her mom was diagnosed with dementia in 2016, and her dad was diagnosed in 2018.
Shonda’s mother, Charlie, has always been a very sweet and caring person, always taking care of her family and friends above all else. As the oldest of five children, Charlie was a caregiver herself, a lover of sports, especially bowling and softball, and a skilled and generous cook. Charlie pursued her caregiving instincts and skills while working as a nurses aide at a local hospital for more than 30 years. She was an active member of her community and her church, and was always someone you could count on for a joke when you needed it.
“This whole journey began when we started to notice she was having trouble managing her finances, something she never had any trouble doing before. When she was diagnosed with dementia in 2016, it was just the early stages, and she was still able to care for herself, taking care of the home, cooking, and even driving while I helped manage her finances.”
It wasn’t until December of 2017 that Shonda’s mother Charlie took a significant turn, suffering a stroke that worsened her dementia symptoms and which made living independently dangerous. A few times, Charlie forgot that she was in the midst of cooking a meal and accidentally set their house on fire. Finally, Charlie moved in with her daughter, a full-time special education teacher, so that she could safely care for her.
Since her mother’s diagnosis, it’s been a struggle to access the care and support services her mother needs while Shonda is at work. Filling in these “care gaps” was and continues to be the biggest struggle for Shonda and her family. Fortunately, they’ve been able to pay a private caregiver to come help care for her mother while Shonda teaches.
Prior to learning of her mother’s dementia diagnosis, Shonda and her family did not know a lot about dementia or its signs and symptoms.
“For a lot of people, the signs and symptoms associated with dementia are just brushed off as a normal part of someone getting older, or, worse, they just dismiss that person as being senile or crazy. I want to fight this stigma and this idea that my mother is any less “here” or any less human for living with dementia.”
Since receiving her mother’s dementia diagnosis, Shonda has taken immense steps to educate herself about the disease and what she can do to best support and care for her mother, while also managing all that comes with being a caregiver while also working full-time.
“The power of raising awareness of Alzheimer’s and dementia is that people can be armed with the tools they need to think twice about monitoring their health better. As I’ve done my own research to learn, I’ve learned about the importance of getting enough sleep, eating better, regularly taking medication, and these are all things that I keep in mind now when I think about my own risk of developing the disease and steps I can take to decrease that risk.”
Another step that people can take to advance knowledge of this disease is to participate in clinical trials. This is especially important for communities that have been historically underrepresented and marginalized in research efforts, such as African Americans and Latinos who are 2x and 1.5x more likely to suffer from Alzheimer’s disease than whites respectively. Shonda and her family were never informed about opportunities to participate in clinical trials until they came to the Alzheimer’s Association, and the legacies of abuse that many African Americans have endured in research were not lost on Shonda, who is herself hesitant to participate.
“Part of me worries about the safety of participating in something like this, and another part of me wonders, ‘do I even want to know?’”
As a caregiver for the last few years, Shonda has had to balance all that comes with being a full-time teacher and a caregiver for both her mother and father, all during a pandemic. Most recently, Shonda endured caring for both her parents as they both struggled to recover from COVID-19.
“There have definitely been some overwhelming, “wet-pillow” nights, but I have an incredible support system in my husband and in my daughter. It’s been so hard to watch my mother lose her memories and her abilities and not be able to do all that she used to, but she is still her. She still cracks a wisecrack every now and then, still makes me laugh, and it’s been a joy and an honor to care for her.”
To join us for the 2021 AIM Advocacy Forum, register now at alz.org/forum