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Leaders Discuss How to Support Family Caregivers

The AARP Caregiving Summit brought together lawmakers, scientists and advocates


Part of the Transforming Life as We Age Special Report

If you have not yet been a caregiver for an older relative or an aging spouse, there’s an excellent chance you eventually will.

For Sen. Tammy Baldwin (D-Wis.), that role came on suddenly. Raised by her grandmother from the time she was an infant, Baldwin was put in the position of having to arrange long-term care for her when the older woman was hospitalized for pneumonia and could not be discharged back home.

“I remember at that instance trying to figure out all sorts of things about temporary long-term care with very little knowledge,” she said Tuesday at the AARP Family Caregiving Summit 2018 in Washington, D.C. When Baldwin had the urgent caregiving duties, she was in the state legislature and had dealt with policy matters related to caregiving. But, she noted, “it’s very different, even if you have knowledge of the programs that are available, when you’re sitting at your grandmother’s bedside having to make some really quick decisions.”

Baldwin was among a number of political and business leaders, policymakers, advocates and journalists who spoke at the AARP summit. The goal of the event:  “driving concrete actions to support our nation’s silent army of 40 million family caregivers.” A video recording of the summit can be found here.

Practical Solutions for Family Caregivers

One of the concrete actions Baldwin is advocating for, along with Sen. Susan Collins (R-Maine), is the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, which the two co-sponsored and which passed unanimously in the Senate. The bill would “develop a coordinated strategic plan to leverage our resources, promote best practices, and expand services and training available to caregivers,” according to a statement issued by Collins’ office after the Senate vote.

That includes creating a council of family caregivers, medical professionals, scientists and others to “look at what we could do to support family caregivers… to identify resources and gaps,” Collins told the summit participants.

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For example, of Maine’s 16 counties, only two have adult day care programs, Collins said. Both are in the relatively populous southern part of the state. Most of Maine is rural. “If we could have one of these in each county, what a difference we could make,” Collins said. Her own parents would have benefited greatly if such a program had been available to them when her mother was taking care of her father, Collins said.

Both senators said they were hopeful the House would vote on the bill late this month or early next year.

How Technology Can Help Caregivers

A group of business leaders addressed the summit on innovations to assist caregivers. Some are already in use; others are still in the development stage.

One simple yet smart idea from the U.S. Postal Service, helps individuals track their mail and make sure nothing is amiss, at no charge. With “Informed Delivery,” available nationwide, the recipient (and/or their caregiver) receives emails with images of the letter-size mail and packages that are on their way. That can prevent theft of packages and let recipients know if they need to walk to the mailbox, said Kriti Vichare, director of innovation for the Postal Service.

“If you’re homebound, you definitely don’t have time to go to your mailbox and find that there’s nothing there,” Vichare said.

Another innovation comes from the Japanese company SoftBank Robotics. Its personal health aide robot named Pepper may one day be able to measure a person’s heart rate and blood pressure by merely “looking at the face of that person” via video, said Shahram Ebadollahi, vice president and chief science officer at IBM Watson Health Group. Ebadollahi said Rice University is working with Softbank on the project, which he predicted might come into use within five years.

Assisting Veterans’ Caregivers

The greatest crisis for those caring for veterans is isolation, said former Sen. Elizabeth Dole, whose foundation works to support veterans and their caregivers.

“I think one of the biggest problems is that they [veterans’ loved ones] don’t self-identify as caregivers,” Dole said. “I’ve heard this so many times — ‘Oh, I’m just his mother. Of course I’m taking care of him.’ Or, ‘I’m the spouse, it’s my responsibility,’” she said.

When loved ones realize they are caregivers, they are more likely to connect with the many resources available for them, such as those of her organization, Dole said.

U.S. Secretary of Veterans Affairs (VA) Dr. David Shulkin said he views the greatest crisis for veterans’ caregivers to be navigating the health care system.

“It must be extremely frustrating to constantly be coming up against these deficiencies and gaps and fragmentation that we have in our health system and not knowing where to turn and not knowing where to get help,” he said. “We haven’t made a system that’s easy to navigate or easy to have all the needs met of people that rely upon you.”

But he and other VA leaders are working to improve care for veterans and caregivers, Shulkin said.

They’re introducing what they call the “whole health model” of care. Instead of physicians directing everything and telling patients what’s going to happen, the VA wants to teach patients how they can practice self-care and work toward their health and life goals, Shulkin said.

Part of that means involving caregivers, he said. “Caregivers have to be an integrated part of that team,” Shulkin noted.

By Emily Gurnon
Emily Gurnon is Senior Content Editor covering health and caregiving for Next Avenue. She previously spent 20 years as a newspaper reporter in the San Francisco Bay Area and St. Paul. Write to her at [email protected]@EmilyGurnon

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