November marks Alzheimer’s Awareness Month, a time to bring attention to a disease that affects millions and ripples through families, communities, and the healthcare system. Alzheimer’s disease is a complex condition that strips away memories, independence, and often, the sense of self. At Athari BioSciences, we are committed to exploring innovative solutions to the challenges of Alzheimer’s through the lens of genomics, while also amplifying the human stories behind the science.
To deepen our understanding, we spoke with Vania, a nurse manager who works closely with Alzheimer’s patients, and Michelle, a granddaughter who has been at the heart of her family’s caregiving journey. Their insights offer a vivid picture of the emotional, physical, and societal impact of this disease, as well as the resilience it demands from everyone involved.
Understanding Alzheimer’s
Alzheimer’s is more than just forgetfulness—it’s a neurodegenerative disease that progressively damages the brain, leading to cognitive decline, memory loss, and ultimately, an inability to perform basic bodily functions. It’s a terminal condition, and its impact is profound not only for the individuals diagnosed but also for their families and caregivers. As Vania explained, “Alzheimer’s is one of the dementias that is ultimately terminal. So, the challenge is to keep the quality and richness of life for as long as possible while addressing their health and engagement.” This delicate balance of preserving quality of life while navigating the inevitability of decline defines much of the caregiving experience. For families like Michelle’s, it’s a journey filled with tough decisions, sacrifices, and moments of bittersweet joy.
The Challenges of Caregiving
For Michelle, caring for her grandmother meant stepping into a role she never anticipated. The transition wasn’t easy, particularly when it came to honoring her grandmother’s wishes while prioritizing her safety. “She always told us, ‘If you want to kill me, put me in a nursing home.’ So doing this was really hard. But we knew we had to, for her own good.” Michelle and her family delayed the decision as long as they could, ultimately placing her grandmother in a nursing home only after a severe fall, which occurred four years after she had initially moved in with them.
Placing a loved one in a care facility can bring feelings of guilt and doubt, as Michelle shared, “Now that she’s in a facility, we rely on others to care for her, but it’s hard not knowing if she’s being treated as well as we would treat her. We do random pop-in visits just to check,”. This level of vigilance reflects the emotional toll caregiving takes. Families grapple with letting go of the person they once knew while adapting to a new reality—a painful yet necessary process. Vania observed, “Families often struggle with letting go of the version of their loved one they remember. They have to adapt and accept the new reality, which is really hard.”
But even amidst these struggles, moments of connection remain. Michelle recounted how her grandmother’s humor shines through, offering a glimpse of the person she’s always known. “Even now, she’ll still give jokes and make us laugh. She can look at me and still switch a pen in my left hand to my right because she thinks being left-handed is wrong”, Michelle shared.
A Holistic Approach to Caregiving
Until science offers a cure, caregiving remains the cornerstone of Alzheimer’s management. Vania emphasized the importance of a patient-centered approach: “We’ve learned that reorienting them isn’t the way to treat them. Now, we go to where they are. If they think they need to go to work, you say, ‘Today you have the day off.’ If they ask for their car keys, you say, ‘Your car’s in the shop.’ It causes much less distress.” Such strategies require empathy and creativity, but they can significantly improve patients’ well-being. Caregivers must also learn to interpret nonverbal cues, as agitation or confusion may signal unmet needs. “When they become agitated, you have to ask yourself: Are they hungry? Are they in pain? Are they tired? Sometimes it’s as simple as giving them a snack to make them content.”
Policy and Support
Both Vania and Michelle highlighted systemic gaps that make Alzheimer’s care even more challenging. Vania pointed out the limitations of existing insurance structures: “Many patients don’t qualify for long-term care insurance because they can still dress or feed themselves, but they still can’t be left alone. It’s a terrible gray area where families are stuck.” She also called for more resources to support caregivers. “Families need more support. It would help if Medicare provided subsidies for care, like adult daycare programs, so caregivers could get a break”, Vania explained. These insights underscore the need for advocacy and reform to ensure that families don’t face these challenges alone.
Michelle and her family had to rely on a loan due to the expenses required. “My mom was retired and took the days, I handled evenings, and my sister helped at night. We worked in shifts, but it was mentally, physically, and financially taxing. We converted part of our house to make accommodations so that she would have all her needs in one room”, she explained.
A Message of Gratitude and Hope
Despite the heartbreak, both women found meaning in their experiences. Vania expressed deep admiration for those working with Alzheimer’s patients: “Shout out to all the caregivers and those working with this population. It can be exhausting and heartbreaking, but it can also be very rewarding.” Michelle urged others to treasure the moments they still have. “Just be grateful you still have them here. Take it one day at a time and focus on the memories.”
As we observe Alzheimer’s Awareness Month, let’s honor the caregivers, families, and patients who face this journey with courage and compassion. At Athari BioSciences, we are committed to driving innovation in Alzheimer’s research, offering hope for a future where this disease no longer defines so many lives. While the disease is influenced by lifestyle and environmental factors, genetics also plays a critical role. We are leveraging our expertise to explore how genomic insights can inform precision medicine. Our goal is to develop therapies that address the root causes of Alzheimer’s rather than just its symptoms, offering hope for earlier interventions and better outcomes. Together, through science and humanity, we can make that vision a reality.
