Qualitative Study Regarding the Perspectives of the Educators of theAlzheimer’s Community
Taylor Bryan, Dr. Martine Hackett PhD Department of Health Science. Hofstra University, Hempstead, New York 11549
Theme Two: Hardships of Work
Alzheimer’s disease (AD) currently affects 5.8 million Americans and is the sixth leading cause of death in adults. It is a subtype of dementia that affects memory, thinking, and behavior. The disease progresses through three stages (mild, moderate, and severe), significantly impacting completing daily tasks and cognitive abilities1,4. AD does not have a cure, and currently, only five FDA-approved drugs to slow cognitive decline and treat symptoms of the disease2
The current theories surrounding the cause ofAlzheimer’s disease are an accumulation of plaques and tangles in the brain as we age:
- Plaques – Beta-amyloid proteins are formed from the breakdown of a larger protein called the amyloid precursor. These build up around neurons. These can prevent signals from being transferred and disrupt cell function.
- Tangles – Represent a build-up of another protein called tau that appears inside neurons. Usually, tau plays a role in binding and stabilizing microtubules. With Alzheimer’s disease, these tau proteins go rogue, detach from the microtubules, and bind with other tau proteins, blocking the neuron transport system3 .
Caretakers (family, friends, or hired specialists) step up to provide for their loved one. Because caregiving is very demanding, they frequently must take time off work to provide care and schedule healthcare visits for their loved ones. It has been estimated that 75% of caregiving for someone withAD is informal care. In 2020, the estimated total cost for all the healthcare visits and treatments to combatAD was $305 billion4 .
A range of companies and associations have formed with the aim to provide support to caregivers challenged with navigating the task of caring for those withAD. This study focused on their perspective in their field and their thoughts on the future ofAlzheimer’s care and treatment.
Recruitment and Participants
• Participants were all employees of an international organization that focused on aiding caregivers and those living withAlzheimer’s disease or other forms of dementia.
• Participants were asked in person or through email to gain consent. Five participants were approached and consented to be interviewed.
Data Collection
• Interviews ranged from 30-45 minutes and were conducted in person with the author.
• Interviews were guided in a 10-question format centered around the main research question, with follow-up questions.
• A demographic survey was sent as a follow-up using Qualtrics
Data
Analysis
• Interviews were recorded using Voice Memo on iPhones.
• Following the interviews, the recording was replayed and transcribed with the aid of anAI software, Rev.
• The transcripts were read through generally, and then during the following reading, codes were determined.
• ATLAS.ti, a qualitative analysis software, was used to compare findings between codes and transcripts of interviews.
Results
Theme One: Challenges in Finding and Supporting Caregivers
Description: When stepping into the role of a caregiver, because it is a role with such responsibility, it can be hard to maintain activities outside of caring for a loved one, such as hobbies or social connections.
Quotes -
Age 25-34 (n=3) 45-54 (n=2)
Gender Male (n=2) Female (n=3)
Race Caucasian (n=5)
Ethnicity Hispanic (n=1) Non-Hispanic (n=4)
Education Master’s (n=3) Bachelor’s (n=2)
Religion Judaism (n=2) Catholic (n=3)
“I was running the groups and I was realizing that especially for couples when one of the spouses has a diagnosis, friends seemed to back away. They become more socially isolated at a time when they needed that comfort.”
Description: Professionals in the field often experience fulfillment in offering support to families. However, the role can also be emotionally taxing as they navigate the grief and frustrations of caregivers, people living with the disease, or families.
Quote –
“Yeah, listen, there are times that you're going to come out of a care consultation and be like, wow, I really helped this family. And then there are times that you're working with people thatlisten... You're working with all different types of people and you do get crazy people that, I don’t know, I had a phone call the other day… she just attacked me and was like, "what are you doing as the associate? What are you doing?" And I had to respectfully ask her to not use that tone with me.”
“Sometimes you can't generalize the approach that you use in [region 1] the same way that it's going to roll out in [region 2] because the regions are very different. The populations that you're working with are very different as well. And so I think I wish they understood that regionally, everyone is so different.”
Theme Three: The Promise and Limitations of New Treatments
Description:Alzheimer’s disease currently only has five drugs approved by the FDA, and all of them are not cures, but methods to slow cognitive decline and manage symptoms that arise with the disease. Since it’s discovery in 1906. There has been no cure.
Quote –
“I feel like a lot of drugs are being presented to focus on the early stage of Alzheimer's, but not enough is being presented to treat people middle or late stage. How can we help them in their cause? Because if I have middle to late stage of Alzheimer's, if I see treatments available and like it's too late for me, I don't qualify for the trials, that would not be my concern.
This study investigated the various experiences of professionals working in theAlzheimer’s field as educators and consultants. They have the demanding role of acting as intermediaries between advancements in the field and the lives of caregivers, families, and those living with the disease. Their role is vital in communicating important resources that families and caretakers can use to learn about the disease and receive support from the Alzheimer’s community. By assisting the caretaker and offering support, they can provide better care for their loved one. The emotional toll on the workforce stresses the importance of providing resources and support for professionals to continue their efforts. Moving forward, a larger emphasis on caregiver engagement, treatment development, and a positive work environment is essential to fully realize the potential of this "Golden Age" ofAlzheimer’s research and care.
Study Limitations
Some limitations of this study include only having a small portion of the workforce in that specific chapter. Most participants have worked with the organization for less than two years.Another limitation is the lack of diversity. This is interesting because the research field ofAlzheimer’s also struggles with diversifying its population of study.
Future Research
When exploring this topic in the future, other organizations that provide similar aid to caregivers, families, or those living with the disease should have their workforce interviewed to see if similar experiences translate across states or types of aid. Another aspect that should be explored is interviewing other chapters who are a part of this organization to see if these issues translate across multiple chapters of the organization.
1. What is alzheimer’s? Alzheimer’s Disease and Dementia. (n.d.). https://www.alz.org/alzheimers-dementia/what-is-alzheimers
2. Alexander, G. C., Knopman, D. S., Emerson, S. S., Ovbiagele, B., Kryscio, R. J., Perlmutter, J. S., & Kesselheim,A. S. (2021). Revisiting FDA approval of aducanumab. New England Journal of Medicine, 385(9), 769–771. https://doi.org/10.1056/nejmp2110468
3. What happens to the brain in alzheimer’s disease? | National Institute on Aging. (n.d.).
https://www.nia.nih.gov/health/alzheimers-causes-and-riskfactors/what-happens-brain-alzheimers-disease
Years at Organization Avg. 2.00 Min: 1
Years of Experience
Max: 3
Avg. 10.60 Min: 2.00
Max: 25.00
Relation to Alzheimer’s Grandparent (n=5) Great Aunt/Uncle (n=1)
“Nobody wants to ask for help, and [pause] I think it's a shame. I don't think caregivers really understand that you coming and having a care consultation, one of the best things that you could do for yourself, … And it's not just for the person with dementia. It's for you as the caregiver too, teaching them to understand how important it's to care for themselves before they care for somebody else. It's the whole idea of the oxygen mask and the airplane. You put yours on before you help the person next to you. And it's the same thing for caring for someone with dementia. It's very important.
The findings from this study highlight three themes: Challenges in Finding and Supporting Caregivers, ‘Hardships of Work, and The Promise and Limitations of New Treatments. Professionals in the field express a duality in their work: switching between moments of fulfillment in seeing the impact of their work in real-time on caregivers, families, and those living withAD while also grappling with witnessing the stress and burnout that is also present around caring for someone living withAlzheimer’s. Overall, this study sheds light on the evolving landscape ofAlzheimer’s care, calling for a need to provide a greater scope of outreach and education for current and future families and individuals who will have to face this disease, along with supporting those who have the role of being the educators and advisors.
4. Wong W. (2020). Economic burden of Alzheimer disease and managed care considerations. The American journal of managed care, 26(8 Suppl), S177–S183.
https://doi.org/10.37765/ajmc.2020.88482
5. Ashrafizadeh, H., Gheibizadeh, M., Rassouli, M., Hajibabaee, F., & Rostami, S. (2021). Explain the experience of family caregivers regarding care of alzheimer’s patients:A qualitative study. Frontiers in Psychology, 12 https://doi.org/10.3389/fpsyg.2021.699959
6. Belluck, P. (2024, July 2). New Drug approved for early Alzheimer’s. The New York Times. https://www.nytimes.com/2024/07/02/health/alzheimerstreatment-kisunla-donanemab.html