Mikaela and her family at her wedding

Millennial caregivers: Mikaela’s story

Mikaela and her family at her wedding

Currently, one in six dementia caregivers is a millennial between the ages of 22 and 37. As the prevalence of Alzheimer’s disease and other dementias continues to grow, more young Americans are being called on each year to help care for their loved ones.

One such caregiver is Mikaela Louie. She was just 22 years old when her mother, Irene, was diagnosed with younger-onset Alzheimer’s in 2011. Mikaela was living and working in India at the time, but quickly decided to move home to Seattle in order to help her parents.

“My mom was a physician and had treated people with Alzheimer’s disease, so she was very pragmatic about her diagnosis,” remembers Mikaela. “I know she didn’t want this to affect her daughters’ lives, but it was important for me and my sister to be here to help my dad and spend as much time with her as we could before things progressed.”

Millennials are an unexpected segment of the caregiving community facing unique challenges.

Most millennials are working full-time jobs and are at a critical point in their career for job growth and advancement. It’s also a time when many people enjoy an active social life, develop and advance personal relationships or start a family. While balancing all of this, millennial caregivers are also spending an average of 18.5 hours a week supporting their parents and grandparents living with dementia. As a result, life looks very different for the millennial caregiver.

“It’s a matter of having different priorities,” explains Mikaela. “Your 20s are a time when you should be having fun and enjoying life. While I’ve certainly been able to do that, I’ve also been witnessing a slow decline in my mom’s health, which is difficult.”

According to Millennials and Dementia Caregiving in the United States, half of millennial dementia caregivers said it interfered with their work. Thirty-three percent reported severe consequences that led to their hours being cut back, the loss of benefits or even being fired.

Being a millennial caregiver doesn’t just impact your work life; it also impacts your personal life. For instance, important life events may turn out differently than you’d always thought they would. That was certainly the case for Mikaela and her husband Jacob.

“We decided to get married just a few months after we were engaged so that my mom could experience the ceremony with us,” explains Mikaela. It was just a small private ceremony, a stark contrast to the lavish weddings many people dream of. Still, it was incredibly special day for Mikaela and her mom.

“I’ll always remember that night after my wedding. My sister, my aunt and I were all sitting around my mom’s bed and before she went to sleep, she turned to each of us with a smile — and she looked me straight in the eye, which she rarely does any more — and she said thank you, thank you, thank you.”

Mikaela currently spends at least two evenings a week with her mom while juggling the demands of attending law school at the University of Washington. She’s studying healthcare law and is currently working on an article about surrogate decision-making in medical research for people living with Alzheimer’s and other cognitive disorders.

“The choice to go into healthcare law was absolutely inspired by my mom,” says Mikaela. “She was a very politically active person — even up until a few years ago, she was attending Advocacy Day with me. Law has the power to motivate change in the healthcare system and I want to be a part of that.”

Mikaela has also been actively involved with the Alzheimer’s Association as a Board member and public policy advocate. Through her involvement, she began meeting other millennial caregivers on a similar journey.

“We were working on a fundraiser together and started going out for drinks afterwards. Our parents were in different stages of the disease, so we would share stories and talk about our challenges. It was a relief to spend time with peers who understood what you were going through.”

Together, the group started GenEndAlz, a network of young professionals who support one another and the cause. They wanted to get more involved with the Alzheimer’s Association in a fun and uplifting way. What started out as a casual support group evolved into a team of people who’ve volunteered with advocacy, fundraising, awareness building and much more. GenEndAlz stays connected on Facebook and is always looking for new members.

“It’s surprising how many millennials are impacted by this disease,” says Mikaela. “My way of coping has been to share my story and get involved.”

She encourages other young people to do the same: “The more we talk about it, the more visible it becomes. It’s important for people to understand this disease, so we need to bring it out of the shadows.”

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. The Alzheimer’s Association marks these events by recognizing and honoring the more than 16 million family members and friends across the U.S. who are currently caring for a person living with Alzheimer’s. Join us by sharing a personal tribute message on our website at: http://alz.org/honor.

Leave a Reply