‘It’s a long, grieving process:’ Alzheimer’s devastating impact and the search for a cure

“When I would visit my grandmother, I could tell by her eyes that she still recognized me, but she wasn’t able to talk with me anymore.”

Green Hope High School English teacher Kathleen Holland discovered her grandmother had Alzheimer’s in high school, marking the beginning of a 15-year battle with the disease.

“I don’t remember being surprised that she had it,” said Holland, whose grandmother suffered from short-term memory loss prior to diagnosis. 

A devastating illness that wreaks havoc upon communities, the impact of Alzheimer’s disease extends far beyond the patients it afflicts. 

Holland’s grandmother often struggled with communicating her thoughts and was often emotionally detached from situations. 

“There were moments when my grandmother seemed to realize how much she was forgetting, and I could tell she was scared,” Holland said. “I couldn’t have known then how much worse it was going to get.”

Eventually, her parents would visit the nursing home her grandmother was placed in weekly. By then, her parents were unable to tell if her grandmother recognized who they were. 

“She was not herself, the wonderful woman who had made my childhood such fun,” Holland said. 

Alzheimer’s disease is one of the most common forms of dementia, accounting for 60-80% of dementia cases. Although estimates vary, the National Institute of Aging suggests that more than 6 million Americans older than 65 have Alzheimer’s — a number that is projected to rise to nearly 13 million by 2050. 

People with Alzheimer’s typically survive four to eight years after diagnosis. The symptoms of the neurodegenerative disease occur slowly, beginning with lapses in memory and difficulty remembering familiar information. As the illness progresses, people with Alzheimer’s begin to lose motor movement ability and have difficulty carrying conversations and completing daily physical activities. 

In the last few decades, various nonprofits have streamlined efforts to integrate communities impacted by the disease and support funding for Alzheimer’s research. A nonprofit organization, the Alzheimer’s Association, has invested over $310 million in funding over 900 research projects across 45 countries and sponsors regional chapters. 

Vice President of the Western Carolina Chapter of the Alzheimer’s Association Christine John-Fuller joined the association after caregiving for her grandmother, who suffered from Alzheimer’s. 

“There wasn’t a full understanding [in] just how impactful the disease would be [and] what it would take from a village standpoint within our family to care for her and the cost associated,” John-Fuller said. 

John-Fuller added the difficulty in pinpointing a singular path of progression for those affected by Alzheimer’s. 

“Everyone can have a different path, some progress quickly, [for] some, it might be a slower progression,” she said. 

In its simplest form, Alzheimer’s disrupts daily life. 

“[It] begins in the earliest stages with things like forgetting a recipe, having trouble balancing their checkbook, or getting lost on the way to somewhere they’ve been before,” John-Fuller said. 

Later stages of the disease impact more than just memory; oftentimes people with Alzheimer’s experience significant behavioral and personality changes. The individual’s ability to perform daily tasks continues to diminish and will often require assistance using the bathroom, changing clothing, and eating. 

John-Fuller explains that people with Alzheimer’s struggle to cope with a loss of autonomy, especially in the earliest stages. 

“They are still cognizant of the loss of their daily lives and what they knew to be their normality, [so] there’s frustration on the part of the individual that is living with the disease,” John-Fuller said. 

As the disease progresses, people with Alzheimer’s begin to lose focus on their condition, relaying the grief and loss to family members. 

“The individual very much becomes dependent and stays very close to the primary caregiver, which can feel very suffocating,” John-Fuller said. 

At the Duke Dementia Family Support Program, social worker Natalie Leary offers support to struggling Alzheimer’s patients and caregivers. The program operates through four master-level social workers that provide assistance and education for families with loved ones with dementia. 

Leary said that recognizing the challenges dementia caregivers face is critical in providing them with the necessary help. 

Without the proper resources, caregivers are twice as likely to develop depression.

According to the Centers for Disease Control and Prevention (CDC), families who play the role of primary caregivers are at particular risk of these adverse health effects. “If you’re the primary caregiver of someone living with dementia, it’s a 24/7 job, you never clock in, you never clock out,” Leary said. 

For many, the process isn’t just emotionally taxing. It’s financially devastating. 

An analysis from the National Institute of Aging found that families spend nearly $287,000 in the last five years of dementia patients’ lives. 

Toward the late stages of Alzheimer’s, people require constant supervision to ensure their safety. 

“Either [their family] is providing that care, or [they’re] paying someone to provide that care,” Leary said. 

Families without financial resources turn to retirement funds and loans for out-of-pocket expenses, which can account for up to 70% of costs. Leary said, “It turn[s] into a generational cycle that keeps perpetuating.”

“It’s a long, grieving process, as [they] adjust to the ever-changing nature of dementia,” she said. 

Every month, Kathy Montero leads support group meetings for caregivers at the Dementia Alliance of North Carolina. It isn’t a place for mourning, nor for sharing the low points of their week. Instead, they laugh, cry, and recount recent highlights and struggles together. The group sits in a circle, as one caregiver begins to explain their loved one’s frustration in losing the ability to drive. Several others chimed in with advice and stories of their own experiences.

Montero said that this is an important part of their meetings. 

“No one person is the expert with this, [but] everybody collectively can provide a great forum for how to help get through the journey of caring for a loved one with dementia,” she said. 

A former caregiver herself, Montero took care of her father, who passed away in 2020. 

“It really is soul-crushing,” she said, as she watched her parents caring for her grandfather, and eventually took on the responsibility of caring for her own father. Through her years, she’s witnessed people become caregivers for their spouses, parents, and even grandparents. 

“Most people [are] caregivers for more than five years. It’s a journey, we like to call it,” Montero said. 

Montero began volunteering for the Dementia Alliance, leading her to her current role, which consists of facilitating support group meetings. 

Research highlights the benefits of support groups like these, which provide vital resources and reduce anxiety among caregivers. The support group seems to energize and revitalize its participants. 

“It’s very uplifting, it’s not depressing, in fact, our group probably more time laughing than anything else,” Montero said with a smile.

Recent innovations within biotechnology and neuroscience research are paving the way for potential cures. 

On January 6, the biotechnology company Biogen, which has facilities in the Research Triangle Park, and partner company Eisai received accelerated approval from the FDA for a treatment called Lecanemab. The drug is an antibody that reduces the buildup of amyloid beta plaques, theorized to play a critical role in the disease, and reportedly reduces cognitive decline by 27%, supposedly delaying the onset of the neurodegenerative disease. The breakthrough has been hailed as “momentous” within both scientific communities and those impacted by Alzheimer’s. 

“I tell [patients] in the clinic, ‘If we can at least keep people where they are right now, that would be a huge win,’” Duke Health Neurologist Dr. Andy Liu said. “That’s what we are trying to stay away from, and I think Lecanemab can do that.” 

Liu is currently working on individual research at Duke, investigating the underlying reason behind the phosphorylation of tau. 

“The problem with Alzheimer’s is we don’t know why [these proteins] show up,” Liu said, referring to amyloid plaques and tau tangles that are hypothesized to cause Alzheimer’s. 

It’s a question that still hasn’t been answered, even after 116 years of research. Despite the need for further research, Lecanemab demonstrates potential as a pioneering treatment for Alzheimer’s patients. 

“We know patients with both the amyloid and the phosphorylated tau are actually [seeing] amyloid plaques being removed from the brain, and the amount of phosphorylated tau goes down,” Liu said, commenting on the effectiveness of the treatment. 

In light of recent studies, Lecanemab faces criticism for causing adverse side effects, including potentially fatal brain hemorrhages. Reports indicate that several patients have already died from brain swelling and bleeding, although the risk of bleeding is largely correlated with patients’ simultaneous use of blood thinners.

In 2021, Biogen and Eisai developed a similar treatment named Aducanumab. The drug also used antibodies to target and remove amyloid-beta plaques between nerve cells, and garnered significant criticism regarding its effectiveness and safety. The concerns eventually lead to a congressional investigation against the F.D.A. and manufacturer Biogen in December 2022.

Lecanemab faces similar logistical hurdles to its predecessor, preventing the treatment from becoming accessible to all patients. The drug is priced at $26,500 annually, a number that rises to $37,000 with associated costs factored in. Currently, Medicare doesn’t reimburse Lecanemab treatment, putting the treatment out of reach for Alzheimer’s patients.

Joseph Walker, a biotechnology reporter at the Washington Post, attributes the uncertain future of the drug to the unpredictability of the pharmaceutical industry. 

“There’s always things you don’t know about medications until they get out in the real world,” said Walker. 

While Biogen and Eisai push for full approval from the FDA, patients must still enroll in clinical trials in order to qualify for treatment. 

The potential success of Lecanemab remains ambiguous, but Walker remains hopeful. “A lot remains to be seen, but as of right now I would say I think there’s a good chance that the product is successful,” he said. 

As innovations within biotechnology and neuroscience continue to expand, local high school students strive to contribute to the cause and make an impact in the future. Green Hope High School junior Shreya Dey plans to pursue neuroscience research after high school. 

“I think it’s a field that is very progressive and the idea of contributing to this science has always been within my interest,” Dey said. 

Enrolled in a biomedical innovations course at Green Hope, her coursework has allowed her to explore potential career pathways.

“I know for me personally, entering high school and having the option of [taking] health sciences helped me decide that this is the right path for me,” she said. Dey sees the critical role biotechnology plays in fighting the progression of neurodegenerative diseases. 

“Working with other health science professionals demonstrates that the solutions coming from [biotechnology] have been produced through much research and knowledge,” said Dey. 

Another Green Hope student enrolled in Biomedical Innovations, junior Caroline Nguyen also aspires to work within the healthcare field. 

“Having the ability to be there for patients during their vulnerable moments is what [motivates] me,” Nguyen said.  

In addition to taking on health science-related courses, Nguyen has also pursued extracurricular opportunities that solidified her interest in healthcare. 

“This class is an incredible opportunity to get more hands-on experience and will give me an advantage in my future endeavors,” Nguyen said. 

Despite potential challenges in the future, Nguyen remains unfazed by her commitment to the field. 

“There will be countless frustrating and exhausting days [when] you’ll feel like giving up. But, it’s the drive and perseverance that keeps medical professionals going,” she said.  

As Lecanemab rollout continues, future healthcare professionals in the making ensure a bright future for treatment against the devastating disease.