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Life Interrupted: The Struggles and Triumphs of Millennial Family Caregivers

Jean Accius December 10, 2018

We know the clichés for Millennials. And, for that matter, younger adults of any generation.

Or maybe they’re more assumptions, images we conjure in our heads: a younger person getting out of school, hopefully entering the workforce, and enjoying a nice social life of friends and possibly dating, pastimes (exercise, ballgames, music, etc.), maybe even some trips to exciting destinations.

Life is simple as a young adult. Life is mostly about “me.”

Not so fast on those assumptions. Today in the U.S., ten million Millennials care for a family member who is ill, has a disability or needs help with daily activities. No longer is their focus (if it ever was) on where to go on vacation, the hot new restaurant, how to grow a burgeoning career or, in some cases, getting married and starting a family. Yet the challenge of caregiving for Millennials is in many ways invisible to others, for it challenges the stereotypes many people attach to the generation: entitled, struggling to find an identity, and so on.

Millennials of course are not alone. There are roughly 40 million family caregivers across the United States. However, it may come as a surprise to some that one in four family caregivers is a Millennial. Far too infrequently do we hear about the struggles specific to Millennial family caregivers. They devote nearly as much time on caregiving as their older counterparts—21 hours per week, roughly 3 hours per day, or the equivalent of a part-time job—yet they are more likely than caregivers in other generations to also be working. And, Millennials are roughly as likely as other caregivers to carry out difficult caregiving tasks, including assisting with eating or bathing and performing complex medical and nursing tasks such as wound care and injections. Equally challenging, one in three Millennial family caregivers support someone with a mental health or emotional problem.

The Millennial Caregiver Experience: Firsthand Insights

In an effort to learn more about the unique challenges facing this latest generation of family caregivers, AARP hosted a series of intimate dinners with Millennial family caregivers in Washington, DC and Minneapolis, MN. We wanted to go beyond the data points and hear their stories, from their struggles to the brightest moments of their caregiving journey. We heard just that.

One caregiver summed up a common theme heard at the dinners. “Giving up my life” was how she described the day-to-day change. Her “new life” has included lying on hospital floors while finishing up papers for school, taking on all household responsibilities, and trying to figure out how to pay for not only the mortgage but her mom’s $6,000 per-month prescription. When we spoke with her, the pain in her voice was heavy and the pressure of caregiving was overwhelming. The lights in their home had recently been cut off.

She is only 25. Life was not supposed to be like this.

Many of the Millennial family caregivers expressed how they were not emotionally prepared to become caregivers in their 20s or 30s. They expressed feelings of there not being “enough of me to go around.” Several felt they could never do enough, and some quit all activities outside the home. Thus, while some of their peers were going out and taking trips, they were at home caring for family. Their friends, meanwhile, couldn’t relate to their experience, and so, as some caregivers reported, they kept it all inside. The result of all such dynamics was having to deal with still other challenges: their own isolation and loneliness.

At the dinners, caregivers expressed frustration with the seeming shortage of mental health professionals who understand the unique challenges facing caregivers. Some shared that during medical emergencies, hospitals were ill-equipped to support caregivers, often lacking the needed social workers or mental health professionals.

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Millennial family caregivers share their stories at a dinner in Minneapolis hosted by AARP Public Policy Institute. Photo Credit: William McLeod
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Erin Parrish, AARP MN (middle) listens to millennial family caregivers share their stories at a dinner in Minneapolis hosted by AARP Public Policy Institute. Photo Credit: William McLeod
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Nellie Morris, Purpose Generation (far left) and Susan Reinhard, AARP (far right) listen as millennial family caregivers share their stories at a dinner in Washington, D.C. hosted by AARP Public Policy Institute. Photo Credit: Tyler Mahal Photography
Acknowledging the Journey

It is time we looked more closely at the unique Millennial family caregiver journey. Employers, for example, can do more to understand and support family caregivers. One participant shared how when she sought employment after taking a year off to care for her father, job interviewers often failed to understand the gap on her resume. She stated it best, “We need to expand the notion of what caregiving is so there’s a greater cultural understanding.”

The AARP Public Policy Institute is taking a leadership role on this issue. After all, the experience of Millennial caregivers needs to be recognized. Like all family caregivers, they want the appropriate support, and the necessary resources and tools to enable them to be successful. Those resources and tools range from insights on how to have the hard conversations about their own needs and situations, to what sorts of financial support may be available in a given situation, to how to work through family tensions and manage expectations. They also want to access professionals that have specialized training in caregiving.

In the end, Millennial family caregivers want what all of the millions of American caregivers want—their loved ones to know everything will somehow be okay. They deserve to know the same for themselves.

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Jean Accius

Dr. Jean Accius is a nationally recognized expert on aging policy, livable communities and long-term services and supports (LTSS). He currently serves as the Vice President of the Long-Term Services & Supports and Livable Communities Group within the AARP Public Policy Institute. In this role, he provides strategic direction, thought leadership and technical expertise in leading a team at the forefront of developing innovative policy solutions for livable communities as well as the effective delivery and financing of LTSS.

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