The Unexpected Face of Alzheimer’s

By Becca Verda

Caregiver & Alzheimer's Association Board Member Mikaela Louie speaks with   a staffer from  Sen. Tim Sheldon's office during Advocacy Day.

Caregiver & Alzheimer’s Association Board Member Mikaela Louie speaks with a staffer from Sen. Tim Sheldon’s office during Advocacy Day.

Mikaela Louie is an Alzheimer’s advocate, but she’s not the face of the disease that many people expect. As a young professional and advocate, she has shocked legislators with her story.

Advocacy Day 2014

Mikaela and her mother, Irene, at Washington State Advocacy Day 2014

Mikaela was 22-years-old when her mother, Irene Japha, was diagnosed with younger-onset Alzheimer’s. Irene was 57 and had been a practicing physician for nearly 30 years. Mikaela returned home from living and working in India to begin the unexpected journey of caregiving for her mother. “When you’re of working age and you’re a caregiver for your parents, it’s a role reversal that you weren’t expecting,” says Mikaela. 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 Western and Central Washington Chapter.

Hearing her story now, it seems natural that Mikaela would become involved in advocacy after her mother’s diagnosis. As a Political Science major and legislative intern, she has always been interested in political activism. Mikaela has continued to pursue social justice work in her career and as a volunteer for the Alzheimer’s Association. She credits her mother for this interest. “I really inherited this sort of passion from my mom,” says Mikaela. “She was really involved in politics when she was a young person and then even later in life when I was growing up, and I inherited that passion.”

Despite her passion and family’s political involvement, it took time before they were comfortable sharing their story.

Mikaela at Advocacy Forum, 2014

Mikaela at Advocacy Forum, 2014

“Having the courage to tell your story is incredibly difficult and challenging. Especially with this disease, because there is stigma around it still,” says Mikaela.  “I was not comfortable talking about this for at least a year.”

Mikaela realized the power of her story at the annual Advocacy Forum in Washington, D.C. last year.  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.

It’s been a year since Mikaela was on the Hill visiting legislators, but she can still remember the Facts and Figures that shocked her. 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.facts2015_prevented_cured_slowed_infographic

“We’re spending so much more, and we’re not investing enough to be able to change the course [of this disease],” she says. Current estimates on the cost to care for the 5 million Americans living with Alzheimer’s disease is $226 billion.facts2015_1.1_trillion_infographic

Mikaela’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.

“For me it [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,” says Mikaela.  “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.”

At Advocacy Forum in D.C., Mikaela found a community that shared her experience. She met others who understood

Washington Advocates at the 2014 Advocacy Forum , L to R: Ashley Studerus, Scott Ferguson, Debbie Hunter, Mikaela Louie, Amy Shives and Myriam Marquez

Washington Advocates at the 2014 Advocacy Forum , L to R: Ashley Studerus, Scott Ferguson, Debbie Hunter, Mikaela Louie, Amy Shives and Myriam Marquez

the struggles she faces as a young caregiver, and their stories gave her hope. “To talk to young people about this, about how we can activate and engage change, was so empowering for me,” she says.  “I left hopeful.”

The goal of Forum is to gain support from legislators and lawmakers on initiatives that will fund research and care. However, advocacy also empowers people.  It gives a voice to those in need, and it provides hope for change as people realize they are not alone.

The empowerment and sense of community that citizens gain at Forum are the unexpected products of advocacy work.

“I truly believe that when legislators hear people’s stories, it can impact change,” says Mikaela. “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.”

This week over 1,000 advocates are in Washington D.C. asking lawmakers to increase funding for Alzheimer’s research, care and support. Washington State is represented by 13 volunteers like Mikaela sharing their stories. Together we can make a difference and change the future of Alzheimer’s. Learn how you can get involved.

Mikaela Louie is Program Manager at the Cross Cultural Health Care Program (CCHCP) in Seattle, Washington. She volunteers at the Alzheimer’s Association Western & Central Washington Chapter as an advocate and member of the Board of Directors.

Becca Verda is the Communications and Outreach Coordinator for the Alzheimer’s Association Western and Central Washington Chapter. For questions email bverda@alz.org.

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3 comments

  1. Michelle Falbo · · Reply

    My family has an extensive history of Early-Onset Alzheimer’s disease. My Maternal Great-Grandmother was the first to be diagnosed in our family; I believe she was in her mid-forties as they thought she was just going through menopause but autopsy found Alzheimer’s. She had two sons; one died at 37 years old & the other around 60 years old. Three out of the four children they had together only one is living. My mother died 12/20/97 from it at 47 years old but had symptoms prior to that & her sister (my aunt)died the same year in April 1997. I too carry the Presinilin-1 gene that runs in my family so I will eventually get it too if a cure is not found! Clinical trials are starting soon!

  2. Michelle Falbo · · Reply

    My family has an extensive history of Early-Onset Alzheimer’s disease. My Maternal Great-Grandmother was the first to be diagnosed in our family; I believe she was in her mid-forties as they thought she was just going through menopause but autopsy found Alzheimer’s. She had two sons; one died at 37 years old & the other around 60 years old. Three out of the four children they had together only one is living. My mother died 12/20/97 from it at 46 years old but had symptoms prior to that & her sister (my aunt)died the same year in April 1997 at 45 years old. I too carry the Presinilin-1 gene that runs in my family so I will eventually get it too if a cure is not found! Clinical trials are starting soon!

  3. […] By Mikaela Louie, Alzheimer’s Advocate and Board Member for the Alzheimer’s Association Washington State Chapter. […]

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