Forgetful yet Unforgettable: The Legacy of an Alzheimer’s Patient
By: Karishma Muthukumar, Ashley Gong, and Yannawadee Emma Phungraksakiat
“We took him bowling on his 60th birthday, and he picked up a bowling ball and did not know what it was for.”
Chelsea Cox, MPH, MSW, learned that her father was diagnosed with early-onset Alzheimer’s while in high school. As she witnessed the disease unfold, she not only grappled with the challenges of a caregiver but also became determined to change the outlook of Alzheimer’s. Dedicated to the cause, her experience continues to fuel her research and advocacy today. Chelsea serves as the Associate Director of Education at UCI MIND (www.mind.uci.edu), one of only 32 Alzheimer’s Disease Research Centers across the country funded by the National Institutes of Health. She shares the moving story of her father as a patient and her thoughts on Alzheimer’s care and research progress.
Why is Alzheimer’s so important?
It is the most important medical problem we face today. Many people, especially younger people, may not think that it is relevant to them at this point in their lives unless they have an affected family member. However, the reality is that if we do not find a way to treat or prevent this disease, the public health burden will continue to escalate.
When your dad was diagnosed with Alzheimer’s, what was your response?
At first, it was denial or just a general lack of understanding of the disease. I was in high school, getting ready to go off to college, and didn’t fully comprehend the toll the disease would take on my family. Alzheimer’s is a very slow process, and there are many losses over time. As the disease progressed, my dad lost the things that gave him a sense of dignity and independence — his career, his driver’s license, his ability to communicate, his skills and talents. For example, he used to bowl a perfect game. We took him bowling on his 60th birthday, and he picked up a bowling ball and did not know what it was for. Watching my dad lose everything overtime was devastating, and there was nothing I could do to stop it.
How did it impact you as a caregiver?
As my dad lost his independence, he relied more on us for care, so it is demanding for the family and caregiver, as well. My dad forgot how to get dressed, bathe, and use the toilet. So, my mom and sometimes my brother and I had to help with those things. As a daughter, you would never imagine having to take care of your father in that way, so it was very difficult. But, we did the best we could.
What changes did you notice in your father?
In the beginning, it seemed okay. He would forget things or misplace things, but he was still himself and able to perform basic daily activities. As the disease progressed, the care became very demanding on my mom, and so, we as a family made the decision to place him in an assisted living facility. It was very hard because it was a lot of much older people, in their eighties or nineties even, and here comes someone who is sixty years old — young, mobile, and active.
How would you describe his time at the facility?
He became very combative and aggressive; it was almost like he had delusions of people trying to hurt him, but he was unable to communicate what was wrong. Actually, the majority of people with late-stage Alzheimer’s dementia develop neuropsychiatric symptoms. It got to the point where the facility was no longer able to have him there because he became a danger to others. The facility itself was wonderful; I understand that they didn’t have the capacity to help somebody who was aggressive and strong. We couldn’t take him home in that condition(the only option at that time was to take him to the emergency room), and so that was where we ended up. In the emergency room, they had no idea how to handle a combative Alzheimer’s patient, so he was restrained and administered drugs to sedate him. He left the hospital wheelchair bound and never walked again. He then had to be admitted to a psychiatric hospital where his medications could be managed, which did not feel like the right place for a person with late-stage Alzheimer’s dementia.
How was his experience at the psych hospital?
It wasn’t a positive experience. Every time we visited him (which was restricted to two hours a day), he was sitting alone in the corner sedated and unable to eat or speak. Ultimately, we were able to bring him home for hospice care, and he passed away a few days later. It was nice to have him at home, but the last weeks of his life spent in and out of medical facilities were traumatic. No one should have to spend their final days that way. This experience is what motivated me to get involved in Alzheimer’s research and education. So that hopefully, one day, other people don’t have to go through what my family went through.
The loss of a loved one from Alzheimer’s spurred you into action; how do you think speakers and researchers should present this disease in a way that will resonate with the public?
It is important for researchers and educators to know and to be familiar with the personal impact. If they have not been impacted by the disease personally, I think it can be helpful to talk to and learn from patients and caregivers to gain a deeper sense of the experience. This type of understanding can hopefully resonate with the public, many of whom are or have been directly or indirectly affected by the disease and are eager for information and guidance.
Based on your experience, how should we care for patients with Alzheimer’s disease?
Care should involve caring for the entire family, not just the person with Alzheimer’s disease, but all the people that surround and love and support that person as well. The best type of care is tailored to the specific needs of the patient and the family. I think it really takes looking at the person as an individual, at their history, the things that they used to enjoy, the things that the family enjoys doing together, and incorporating as many of those things as possible into a care plan. For example, my dad was a lover of music. It’s amazing that he couldn’t speak a complete sentence but could remember all the lines to a Beatles song, like what?! So, using music as a tool to help improve quality of life for my dad was important to my family. Also, preparing families early for challenges to come (e.g., financial, emotional) is critical so they are not caught off guard.
How much longer do you think Alzheimer’s disease will persist without a solid cure?
There is an act in place — the National Alzheimer’s Project Act, which charges researchers to prevent and effectively treat Alzheimer’s by 2025; that’s coming up quickly, but I’m hopeful. At one point, a diagnosis of cancer was fatal, and a diagnosis of HIV was fatal. Once these diseases were de-stigmatized and brought to the forefront, we saw increases in research funding that resulted in discovery of successful therapies, and people can now live quality lives with these diseases. The same is possible for Alzheimer’s disease. But we need more people — more young advocates to get involved in the fight, to feel like this is relevant to them, even if they’re not directly impacted right now.
Are there steps we can take to prevent the disease?
Engaging in regular physical activity, eating a healthy diet, staying cognitively and socially engaged, getting enough sleep, controlling heart disease risk factors, and protecting yourself from head injuries are lifestyle factors that people can practice to reduce the risk for Alzheimer’s disease. There is no silver bullet for preventing or slowing this disease, but decades of epidemiological data support these lifestyle strategies can help protect against dementia.
What should young people know about Alzheimer’s?
Young people are powerful. We have a better chance of ending Alzheimer’s disease sooner if more people, young and old, band together and make noise.
How can we support the fight against the disease?
- By advocating for increased funding for research and supportive programs for patients and families.
- By educating the community about the importance of research participation.
Although there are great ideas and research studies that are happening, nothing is effective unless there is engagement from the community. More funding and lots of volunteers are needed for research studies in order to find effective treatments and prevention for Alzheimer’s disease. To volunteer for research at UCI, you can register for the UCI C2C Registry (www.c2c.uci.edu), or you can contact your local NIH-designated Alzheimer’s Disease Research Center (www.nia.nih.gov/health/alzheimers-disease-research-centers).
Interviewer: Karishma Muthukumar
Contributors: Yannawadee Emma Phungraksakiat and Ashley Gong
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