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Caregiving Resources Seen Lagging

Caregiver assistance from Diana Smith gives Alexa Pepper, of

By Hilary Appelman

Going out to eat was a shared pleasure for Alexa Pepper and her husband, Frank, over three decades of marriage. “We used to go out for lunches and Burger King—nicer places once in a while,” she said. “We loved going out together.”

But when her husband began showing signs of dementia 11 years ago, Pepper found her world closing in around her. As he grew increasingly unsteady, Pepper stopped being able to leave him alone at their home in Monongahela, south of Pittsburgh. Taking him along on errands was difficult, too. “I didn’t know anything about resources,” Pepper said. “I just figured it was my job.”

When Frank, 90, fell and ended up in the hospital two years ago, Pepper learned about Pennsylvania’s Caregiver Support Program, which provides income-based reimbursement for caregiving expenses. The reimbursement allows Pepper, 71, to hire aides to stay with her husband for about 30 hours a month—time she uses for grocery shopping and other errands.

Before Pepper discovered the program, “I felt like I was about ready to crack up. I don’t know what I would do if I didn’t have that. I can’t tell you how grateful I am.”

Crystal Lowe, executive director of the Pennsylvania Association of Area Agencies on Aging, said some 7,200 Pennsylvania families received $22 million from state and federal caregiver support programs in 2013.

More than 2.7 million Pennsylvanians provide unpaid care to adult relatives or friends, according to the AARP Public Policy Institute, which estimated the value of that care at $19.9 billion for 2009.

“People are giving so much care to family members to keep them at home, and most of it is uncompensated,” said Ray Landis, AARP Pennsylvania advocacy manager. “The pressures of caregiving can be overwhelming.”

Many caregivers also work full time and care for children, Landis said.

The Caregiver Support Program is administered by the state’s 52 Area Agencies on Aging—a mix of private and state agencies—which provide services such as adult day care and home-delivered meals. Proceeds from the state lottery help fund the AAAs, which last year received more than $248 million.

Studies underway

A 2011 report by AARP, The Commonwealth Fund and The Scan Foundation ranked Pennsylvania, which has one of the oldest populations in the country, 39th among states in long-term care services—and 46th in support for family caregivers. AARP would like more resources to go to programs that help people stay at home as they age, said AARP state spokesman Steve Gardner.

“Every survey we’ve ever done, by​ a more than 90 to 10 margin, shows that people would rather be at home,” Gardner said.

Two state commissions appointed by the legislature and the governor will make recommendations later this year on improving caregiving resources.

Rep. Michele Brooks (R-Jamestown), who spearheaded the legislative commission, said the unique characteristics of each area of the state should be considered so that services can be customized to fit the needs of their communities.

“Our parents were there for us; our grandparents were there for us,” Brooks said. “We want to be there for them.”

Caregiving “is not just an issue for folks that need long-term support services; it’s an issue for everyone because of the impact on the budget,” Landis said.

Lowe said there should be more outreach about programs available for caregivers, and to let family members know “it’s OK to ask for help.”

AARP is holding a series of events and town halls to help members and the public understand what caregiving support is available and to hear caregivers’ concerns. An event will be held May 14, from 11 a.m. to 1 p.m., at the Pittsburgh Project, 2801 N. Charles St. Other events will be held in York in June, Erie in July and Philadelphia in September.

The AARP Caregiving Resource Center has more information and resources for caregivers.

Hilary Appelman is a writer living in State College, Pa.

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