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How Online Volunteers Support Caregivers

Family, friends and strangers pool their talents online to ease caregivers' burdens

By Sherri Snelling | July 19, 2012
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Sherri Snelling, executive director at Keck Medicine of USC and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.

"What can I do to help?"

It's the question friends, neighbors and family often ask the nation's more than 44 million family caregivers. But when someone is caught off-balance in the crisis and chaos of caring for an aging parent or an ill spouse, he or she does not have the time or energy to create a list of priorities, manage a calendar or coordinate all the help being offered, no matter how necessary it is. And so, too often, caregivers plow forward on their own, carrying the burden alone.

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Enter a new breed of volunteers: friends, relatives and total strangers who sign up to help caregivers via online communities.

There are several established websites that help caregivers tap into the time and skills of such volunteers, including Lotsa Helping Hands, CaringBridge, CareFlash and CarePages, as well as newer outlets such as CareZone, CareTogether and Senior Care Society’s Family Portal. In addition to connecting caregivers and volunteers, these networks provide access to resources and social networking for those in the ailing loved one's circle.

A Generation of Volunteers With Energy to Spare

These communities reflect the activist approach of today's volunteers, says Steve French, managing partner of the Natural Marketing Institute, a global consulting firm for health, wellness and sustainability. "Boomers are volunteering at a higher rate than the previous generation did at the same age," he says. Thirty-nine percent of boomers say volunteer work is an important part of their lives. According to the Corporation for National and Community Service, the federal agency that oversees SeniorCorps, AmeriCorps and other projects, the number of active volunteers age 65 and over nationwide is expected to be about 13 million by 2020, up from 9 million in 2007.

These volunteers want to make a difference, and many know from experience the kind of support caregivers need, such as grocery pick-up, child care and yard work. More than a million online volunteers have already performed more than 2.5 million tasks for caregivers, from delivering meals to providing rides to doctors' appointments to finding medical equipment covered by Medicare. Whenever a caregiver cannot fit something into his or her busy life, the circle of volunteers fills the gap — directed, as in the case of Lotsa Helping Hands groups, by a detailed online Help Calendar, created by the caregiver with the input of nurses and caregiving professionals.

"When my mother was diagnosed with a brain tumor, our family was devastated," says Wendy Naumann, who created a community of volunteers through Lotsa Helping Hands. "My sister and I live out of state, and even though my brother and other sister live in the same city with my mom, we wanted to be helpful." Using the online community to recruit and coordinate volunteers from a distance, Naumann says, "made it much more feasible for us to keep my mom at home during her entire illness. Some volunteers became an extension of the family."

More than 50 other groups, including the Alzheimer’s Association, the National Family Caregivers Association, and the Leukemia and Lymphoma Society, have used Lotsa's platform to create online support communities of their own. "The communities have become sacred gathering places for friends and family who want to help a caregiver," says Brooks Kenny, Lotsa's chief marketing officer. "Not only do caregivers get the help they need, the volunteers get such satisfaction from giving back to someone they care about."

Although most online communities draw primarily on the friends and families of caregivers, the websites have found that many other people are willing to step up and help strangers. Lotsa recently launched an Open Communities area where people can volunteer to support caregivers in their community even if they do not know the families personally.

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CaringBridge — launched in 1997 to create an online space where concerned friends and family could post well-wishes, and where caregivers could provide updates — has witnessed this phenomenon as well, especially among those who have been through a caregiving journey themselves. "More people who had a powerful, personal experience using a CaringBridge site to connect family and friends during a health event realize that other people could benefit from the experience and ask us how they can support others in need," says Ronda Maurer, a volunteer engagement specialist for the site, which had 43 million visitors last year. "We rarely need to recruit volunteers — we have so many people willing to help."

Caregivers Who Pay It Forward by Helping Others

You would think that once caregivers have been through their journey of caring for a loved one, they would be eager to relax and take a break. But a study by University of Massachusetts researchers that was published in the Journal of Gerontology found older adult caregivers were more likely to be volunteers than those who had not been caregivers.

"I have already begun to pay it forward in helping out extended family members who are in a somewhat similar situation," Naumann says. "No one should have to reinvent the wheel or go it alone when they are faced with a traumatic situation like the chronic illness or possible death of a loved one. Volunteering is a very fulfilling experience, whether I am helping someone else or receiving the benefits of a volunteer's care and support."

With an increasing number of Americans living longer and requiring care, there will be more family caregivers who need help to avoid the burnout and stress endemic to the role. Getting an occasional break is essential if a caregiver is to be able to care for his or her loved one successfully long-term, and these online communities are responding to this need in a very powerful, very modern way.