Diagnosed Too Soon: My Mother’s Alzheimer’s Story
Alzheimer’s Association Board Member and caregiver, Mikaela Louie, speaks out about her mother’s early-onset Alzheimer’s diagnosis and how the horrific disease has affected her family. Learn more from her Alzheimer’s story.
Most women who are recent college graduates are miles away from thoughts of Alzheimer’s disease. Mikaela Louie was actually working in India post college, so she was miles away from home; but sadly, the horrific disease was very much her close reality. Her mother, Irene Japha, a practicing physician for nearly 30 years, was sadly unravelling before her eyes. On Skype, to be exact.
“I had known for about a year that something was going on as there had been signs. Although I was pretty much in denial and too busy to know the extent of the problem,” Louie relays. “It wasn’t until I had a Skype call with mom, that she informed me of her diagnosis, that my world began to shift. I was in shock.”
A Surprising Alzheimer’s Diagnosis
It wasn’t until Louie did more research that she realized Alzheimer’s was a hopeless diagnosis as there is currently no cure. At age 23, she decided to move home to be close to her parents and do everything she could for her mom, as well as, be an advocate for the cause and fight to end Alzheimer’s.
Most people believe that Alzheimer’s is a “disease for elders” so it took some time for Louie’s family to process the whirlwind of emotions, information and life changes. People are not supposed to get Alzheimer’s at age 57 — the age her mom was when she started to show signs of the disease — which is why the family was even more floored by the unsuspecting diagnosis.
Louie’s father, also a physician, became her mother’s primary caregiver, although the family did hire part time in-home care. She notes, “There is a wonderful woman who comes to the house and mom goes to an elder care day program twice a week. This allows not only respite for my dad, but also is incredibly important for my mom to be social, active and get out of the house.”
She also helped care for her mom and became an unexpected face in the fight to end Alzheimer’s. Through her journey as a caregiver, she became involved with the Alzheimer’s Association as a volunteer and joined the Board of Directors at the Washington State Chapter. “When you’re of working age and you’re a caregiver for your parent, it’s a role reversal that you weren’t expecting,” recalls Louie.
The Power of Advocacy for Alzheimer’s
Despite her passion and family’s political involvement, it took time before Louie, her dad and her sister were comfortable sharing their story.
“Having the courage to tell your story is incredibly difficult and challenging. Especially with this disease, because there is stigma around it still,” notes Louie. “I was not comfortable talking about this ordeal for at least a year.”
Part of the reason she began to talk about her story was the realization that advocacy, clinical trials and involvement were the key to helping to find a cure. Mikaela realized the power of her story at the annual Advocacy Forum in Washington, D.C. in 2014. She joined nearly 1,000 advocates, caregivers and individuals with dementia who gathered in the nation’s capital to ask lawmakers for their support on legislation and funding critical to the fight against Alzheimer’s.
“I truly believe that when legislators hear people’s stories, it can impact change. They can hear numbers and figures, but until you put a face to a struggle, change doesn’t happen. We make an impact — not only for families living with the disease now — but for the future. There are currently not enough clinical trials and the cause needs a huge increase in funding through Congress. Even though the population is out there with 5 million who have been diagnosed with Alzheimer’s, consent is a huge challenge. Getting the word out there and fighting for the cause helps legislators and the public know how important it is to get funding and participation.”
Although Congress recently passed a major increase in Alzheimer’s funding — $350 million to $986 million annually — Louie says it is “still not even close to the $2 billion scientists say they need.”
Appointing an ‘Alzheimer’s Czar’ Might Help the Cause
The Alzheimer’s facts and figures were especially shocking to Louie. She easily rattles off annual funding numbers from the National Institutes of Health for disease research: Cancer $4.9 billion, HIV AIDS $3 billion, Alzheimer’s and other dementias $591 million. The contrast between funding is shocking, even though Alzheimer’s is the 5th leading cause of death in adults aged 65 and over, and the 6th leading cause of death in the U.S.
“We’re spending so much more, and we’re not investing enough to be able to change the course of the disease,” Louie notes. In fact, current estimates on the cost to care for the 5 million Americans living with Alzheimer’s disease is $226 billion, so the funding for research needs to be higher to help find a cure and spend less on the actual care. She discusses how her father, pediatric oncologist Ron Louie, believes that appointing an Alzheimer’s dementia therapy czar and treating the disease like AIDS or cancer may help.
“Working with patients and trying different treatments will help. My dad wants to see more therapeutic trials. He believes that much like AIDS and Cancer, Alzheimer’s needs its own czar. A leadership role is needed as there are currently infrastructure challenges with the NIH, and someone is needed to organize and direct the cause.”
Some of the Washington state studies confirm that unlike national cancer and AIDS research infrastructures, a comparable Alzheimer’s therapeutic research structure seems to be lacking:
- Washington State has 100,000 people living with Alzheimer’s and dementia, yet there are only seven open Alzheimer’s dementia therapy studies listed on the website: clinicaltrials.gov
- By contrast, there are more than 500 adult cancer trials for 300,000 patients, and more than 40 trials for 12,000 HIV patients
- Researchers recently cited a 99% failure rate in drug development over the past 10 years
Taking Action and Educating the Public About Alzheimer’s
The Louie family is a powerful force to help the fight against Alzheimer’s. But more involvement, activism and funding is needed.
Louie’s first hope for her advocacy work is to increase funding for a cure, not only for her mother’s benefit now, but for the benefit of her future and her children’s future. The second is to change the narrative of Alzheimer’s. She states:
“For me the Advocacy Forum was important because the narrative of Alzheimer’s that is common in our country and around the world is that it is an old person’s disease. Our grandmas and grandpas have Alzheimer’s, but when my mom was diagnosed it was a shock, because I never saw people my age go through this. People need to be aware.”
She is excited that the Alzheimer’s Association is in the process of launching a Young Professionals for Alzheimer’s Awareness group.
The main goal of the group is to activate and engage local emerging leaders to help broaden outreach and influence to fight Alzheimer’s disease and other dementias. Meanwhile, life is still happening and Louie is watching her mom transform before her eyes. By taking action she at least feels comfort through her advocacy work:
“Mom suffers so much more than memory loss. She has problems with utensils, walking, depth perception, colors, speech… I think she is an amazing fighter and survivor, but four years in she has plateaued into mid-stage Alzheimer’s. She still finds hope and and laughter, though, so that is a comfort, and I can only hope we make progress with this horrific disease. More people need to get involved and we need more funding.”
About Mikaela Louie
Mikaela Louie is the Program Manager of “Closing the Gap: Cultural Competency Training and Consulting” for The Cross Cultural Health Care Program, a Seattle-based nonprofit organization. She has worked with over 45 healthcare organizations across the country, including state government agencies, hospital systems, health plans and community health centers to improve access to equitable care.
Mikaela serves on the Board of Directors of the Alzheimer’s Association Washington State Chapter. She is an outspoken advocate for enhancing care and support for those affected by Alzheimer’s and other dementias, increasing research investments, and raising concern and awareness among younger generations. She has a B.A. in Political Science and Philosophy from the University of Wisconsin-Madison.
Editor’s Note: Information included in this article was taken from “The Unexpected Face of Alzheimer’s” by Becca Verda.
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