Millennials and Generation X: Meet the new Faces of Caregiving

Jed D. Johnson, MBA, MSW

•    Andrea Simone supports her 35-year-old husband who received a severe brain injury while serving in Afghanistan.

•    Shannon and Ashley Campbell’s poignant “I’m Not Gonna Miss You,” captures their family sentiment in caring for their father, the iconic country western singer Glen Campbell who has been diagnosed with Alzheimer’s Disease.

•    Danielle Dallo felt lost and alone in her efforts to connect with her son, Daniel, who has autism. But with help from a local Easterseals she and Daniel have made huge strides. He's even told his dedicated mom that he loves her.

What do these young adults have in common? They represent the new face of caregiving.

Over 66 million Americans identify as caregivers. They’re a group contributing an estimated $450 billion in uncompensated care to our economy. And they’re younger than you may think.

Today, as Americans live longer, more of us are taking on the enormous responsibility of caregiving at much earlier ages - often while still needing to work, care for other family members and ourselves. Not only is the face of caregiving changing, but also the responsibilities and type of care provided, and many Americans aren’t ready.

Easterseals and Massachusetts Mutual Life Insurance Company (MassMutual), sought out to learn more about this emerging group. Findings from their joint Many Faces of Caregiving study revealed one-third of the country’s younger generations--Millennial and GenX (ages 25-49)--already identify as caregivers. It’s a journey starting earlier, and lasting longer.

While many of their peers are launching careers or starting families, these hidden heroes are supporting their spouses, parents, grandparents, children with special needs, siblings and friends.

The misconceptions don’t stop there. Caregiving is no longer a predominantly female responsibility. The study shows just as many men as women are stepping up to provide care to loved ones within the young adult group.

It’s worth nothing a number of the tasks performed in the caregiving role varied by gender (e.g. 13% of male caregivers indicated they provided financial support only vs. 6% of their female counterparts), as did handling stress associated with caregiving. Women are more likely to experience increased anxiety and unhealthy eating as a result of caregiving while male caregivers were nearly twice as likely to turn to smoking.

Another dismantled stereotype from the study? The misconception that most caregivers provide care to loved ones due to a physical condition (e.g., limited mobility, use of wheelchairs, rehabilitation). The reality is 77 percent of caregivers actually provide care for emotional or mental health conditions, memory problems or dementia.

Unfortunately, there is a commonality among caregivers: their readiness. The majority of study respondents (70 percent) have not yet had the critical conversation with their families and loved ones about the future, as it relates to their life care planning. In addition, not even half (47 percent) of caregivers surveyed admit to being very satisfied with the care they are able to provide, reinforcing the need for continued support and education for all.

Now comes the good news. There are services and supports out there ready to help current and upcoming caregivers every step of the way. Easterseals is here for all caregivers as they make a tremendous contribution to their loved ones and our communities. We’re committed to a holistic approach to the caregiving experience, providing valuable services and supports; offering rewarding education/training opportunities; playing a leadership role in the public policy arena at the national, state, and local level; as well as contributing to the research agenda.

There’s a demand for education and information for young caregivers—particularly in financial planning, respite and transportation—all areas Easterseals and its partner organizations are ready to provide.

And we’re learning from this group too. The study revealed the most effective way to reach out and connect with this age demographic is via the web (by nearly a 1 to 3 margin). Once an individual did embark upon their caregiving journey, however, there was a significant increase in the desire to connect with others (whether virtually or in-person) through support groups, social networking events or via social media.

Our goal is to support caregivers throughout their journey—from the challenging, to the brightest moments, and yes, there are some bright spots. Given all the stressors caregiving brings, most respondents equally identified positive and beneficial outcomes from what can be considered a tough situation. The majority of respondents developed a closer relationship with their loved one, experienced a good sense of self and enjoyed time spent with those who they’re providing care.

Former First Lady Rosalynn Carter once said, “There are only four types of people in the world: Those who have been caregivers; Those who currently are caregivers; Those who will be caregivers; and Those who will need caregivers.”

As we look towards the future, these survey results further reinforce that sentiment, but simultaneously challenge us to re-think some of our assumptions as we embrace The Many Faces of Caregiving.

To access a copy of the survey summary, click here.