“We need to be focused on the little wins, as well as the big." Ellen Frinks shares her story.
When I was in middle school, my grandmother was diagnosed with mild cognitive impairment (MCI), which later became a diagnosis of Alzheimer’s disease. She was our matriarch and the primary caregiver for the grandchildren in our large family in Jacksonville, Florida — as well as most of the children in our neighborhood.
My grandmother’s Alzheimer’s journey began with the classic signs of the disease, and then escalated. The transition from my grandmother being a caregiver to the person in need of care was a difficult one. This was the hardest experience that our family would survive. My grandmother had nine children and 26 grandkids to help take care of her as her disease progressed, but ultimately, the caregiving role took a severe toll on my aunts. Two of them passed away within a year of my grandmother.
I've learned that Alzheimer’s is a disease of the entire family, and that caregiver burnout is very real. After experiencing this as a child, I wanted to have an impact on the Alzheimer’s journeys of other families like mine.
My personal passion, turned professional
My grandmother donated her brain to science, and science became the focus of my future life. I majored in bioengineering with a focus on medical genetics, spending several years working in the field of diabetes before finding my home in a neurology practice. As a clinical research nurse in neurology, I am on the frontlines with my patients, working with novel new treatments. I get to share in their journeys as they volunteer to help researchers find disease-modifying treatment for Alzheimer’s disease.
I also engage with the community as an Alzheimer’s Association program educator. These programs allow me to share my passion and excitement for research while listening to real people’s stories, and providing the support they need in their most difficult moments.
We need more diversity in clinical trials
Clinical trials are particularly important in Alzheimer’s disease. Without this research, there will never be a treatment or cure. In order to increase diversity in trials, long-term partnerships with communities of minorities must be formed. Education campaigns that discuss the process and benefits of clinical trials, including examples of how the absence of minorities in research leads to poor outcomes in those communities, are of particular importance.
In my work, I continuously reach out to minority communities, offering education and free memory screenings, always looking for opportunities to provide services. Some of my most fruitful conversations with people considering a clinical trial have been around this simple fact: Any time you put something new in your body, there is some uncertainty. Whether you try a new food, or a new prescription, you are trying something new. This example resonates with people. Sometimes people shift their thinking about getting involved in a clinical trial when they realize that they will not be alone, because in a clinical trial there is the direct support of a doctor and dedicated nurse as you try this new thing.
I’m hopeful that we add new assessments into our work that measure quality of life so we can extend the good days for more families while we continue to work toward a cure. So many therapies could be a gamechanger for families, and it’s my hope we focus on a more holistic approach, because every second matters on someone’s Alzheimer’s journey. Each moment saved equals experiencing another milestone — a marriage, a birth — with their families.
Caregivers must care for themselves
Caregivers: When you take moments to recompose, you do yourself and the person you love the greatest favor. It is my hope that people will utilize support group resources and respite care so that their family units are not affected the way mine was. Many people say: “No one can care for my mom the way I can” and take on all the responsibility without caring for their own well-being. Care has to come from all directions, for all the people involved.
While there is still so much work that needs to be done in the field of Alzheimer’s research, we need to be focused on the little wins, as well as the big. Sometimes climbing the mountain is done in steps, and that is something we cannot do alone.
As I work to help families facing Alzheimer’s, I am in the business of hope. There are no guarantees in this life, but we continue to work, and we continue to hope. I take that responsibility to heart, for my family and for yours.
About: Ellen Frinks, RN, CCRC, is a clinical research nurse, Alzheimer’s Association program delivery volunteer and event participant. She has been assistant director at Axiom Clinical Research of Florida for the past four years.