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 Tech Industries, Organizations Band Together To Launch National Caregiver Council

Caregiver and tech organizations have formed a Caregiver Council to raise awareness and to help address the needs and services of family caregivers.
The term “family caregiver” refers to an unpaid family member, friend, or neighbor who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of daily living tasks, from bathing, dressing, and taking medications to tube feeding and ventilator care.
There are 44 million family caregivers over the age of 18 years (approximately one in every five adults), according to National Alliance for Caregiving data. The economic value of their unpaid work has been estimated at greater than $50 billion, says the organization.

High Demand, Low Recognized Position

“The transition to a family caregiver happens suddenly. One day you’re not a caregiver and then the next, you are,” says David Inns, council member and chief executive officer (CEO) of GreatCall, a company that focuses on active aging technology (customized smartphones, flip phones, apps, and home devices) for older consumers to keep them independent longer. “This council is trying to break through to raise awareness of the solutions to help caregivers out there.”
Inns has had personal experience, having been through the process with a father who had cancer for several years and now with an 86-year-old mother who is generally in good health.
Compounding the problem is that family caregivers often do not even see themselves as such. They see themselves as daughters, wives, sons, friends, and neighbors, not necessarily as caregivers. When the term “caregiver” is used, people often think of a professional nurse or home caregiver. The council adopted the term “family caregiver” to better define this rapidly growing role. Another term it wishes to promote is “respite care”—taking a break from the day-to-day caregiving grind to reenergize and stay strong to enable continued care for a loved one.
“We need to have a shared understanding of who family caregivers are and where they can turn for resources,” said Gail Gibson Hunt, another council member and president and CEO of the National Alliance for Caregiving, in a joint press release. “I’m encouraged by the work of the council to identify a common language for caregivers.”

Proactive Versus Reactive

Caregivers currently exist in a vacuum in which the responsibility is suddenly thrusted upon them. As such, they frantically Google for resources.
Council member Sherwin Sheik, president and CEO, CareLinx, would like to see a reversal of events occur. “We need to raise the issue of family caregivers so we can have more proactive conversations instead of reactive conversations. There is a lot of preplanning that needs to happen.”
Sheik saw what his mom and aunt were going through in terms of finding reliable, affordable care for his sister who has multiple sclerosis and is quadriplegic and blind, and for his uncle who has Lou Gehrig’s disease that requires 24/7 health care.

Broken And Stigmatized System

“I realized the industry was broken. Families are torn apart—loved ones can’t speak for themselves, and the kids fight over how to best take care of them,” he says. As such, he developed CareLinx, what is colloquially known as “Match.com plus Uber meets caregiving.” About 2,000 families a month use the service, which matches families to a database of more than 100,000 professional caregivers.
“The problem with caregiving is that no one plans for it. No one talks about it, even when they go through it,” says Sheik. “There is a stigma about not wanting to talk about aging even though it’s a natural process. I joined the council so as to help build a legacy where it is okay to talk about it.”
Initiatives under development with the council include:
·         Curated resources in categories most critical to caregiving: caregiver support (physical, emotional, and social), health/diseases, driving/transportation, finances, housing, legal issues, and fraud;
·         A caregiving resources tool to organize the thousands of options and identify those most beneficial at each stage of the caregiver journey; and
·         Research on issues related to caregiver needs to better inform and direct potential solutions.
Jackie Oberst is Provider’s managing editor. Email her at joberst@providermagazine.com. Follow the magazine on Twitter @ProviderMag and @ProviderMyers.
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