Lawmakers urged to better support family caregivers


It’s called the “new normal,” said Susan Reinhard, senior vice president and director of the AARP Public Policy Institute.

There are more than 42 million unpaid family caregivers in the United States, all of whom are playing an increasingly critical role providing complex chronic care in homes, improving the quality of life for their loved ones and helping reduce the use of nursing homes and hospitals. They’re also given greater responsibility for dealing with complex medical and nursing tasks because of shorter hospital stays and improved at-home care technology. However, training is typically lacking or nonexistent for how to handle these demanding and complicated issues at home, Reinhard said.

Reinhard was the keynote speaker Tuesday at King Kamehameha’s Kona Beach Hotel, where more than 60 people attended an AARP presentation focusing on long-term care and caregiving in Hawaii. Her visit coincides with an effort to get state legislators to enact the original Senate Bill 2264, commonly known as CARE, or The Caregiver Advise, Record, Enable Act.

The bill would require hospitals to provide patients with the opportunity to designate a caregiver on medical record, provide clear, detailed instructions to caregivers on tasks performed after discharge at home and notify a caregiver before the patient is discharged or moved, said Barbara Kim Stanton, state director of AARP’s Hawaii branch. Not only would this bill provide support for caregivers, it would also discourage costly and unnecessary hospital readmissions. Seventy-one percent of Hawaii’s hospitals were assessed Medicare penalties for excessive readmissions in year two of the federal Hospital Readmissions Reeducation Program, she added.

While the bill passed through the Senate and cleared the House Health Committee last week, Stanton said there is much to do to garner support from lawmakers. She insisted it’s been a monumental uphill battle, one her organization intends to fight until the end. AARP is a nonprofit, nonpartisan advocate for people age 50 and older with approximately 148,000 members statewide. She urged attendees to contact Big Island state representatives and Rep. Sylvia Luke, D-Makiki, Nuuanu, chairwoman of the House Finance Committee.

Stanton said the House Finance Committee has yet to schedule a hearing for the bill and if that doesn’t happen soon, the bill will die, essentially abandoning the not-so-small and valuable army of family caregivers. In Hawaii, there are more than 247,000 family caregivers providing 162 million hours of unpaid care for their loved ones, valued at about $2 billion annually. By doing so, they’re helping keep their family members at home and out of extraordinarily expensive institutions.

Private nursing homes in Hawaii cost nearly 50 percent more than anywhere else in the country, with an average price of nearly $145,000 a year, added Bruce Bottorff, AARP Hawaii communications director.

After the House Finance Committee, SB 2264 would then go to a House-Senate conference committee, followed by final votes. All of this needs to be done before May 1, the end of Hawaii’s legislative session.

Hawaii County has the second oldest population in the state, with nearly 16 percent of residents 65 years old or older. As the population ages, family caregiving is emerging as a big community issue, Bottorff said.

To understand the impact of this dramatic expansion of caregiving duties, AARP Public Policy Institute and United Hospital Fund undertook the first in-depth nationally representative population-based online survey of 1,677 family caregivers to determine what medical and nursing tasks they perform. The report, “Home Alone: Family Caregivers Providing Complex Chronic Care,” reveals the complexity and difficulty of specific tasks, the lack of support and training family caregivers receive, and the effect on their quality of life. It also offers a number of solutions, which include health care professionals rethinking and restructuring the way they interact with family caregivers in daily practice.

The report revealed nearly half of family caregivers were expected to do things that would make nursing students tremble. This includes managing multiple medications, giving injections, caring for wounds, preparing special diets and operating medical equipment, for those with multiple chronic physical and cognitive conditions. Most family caregivers had little or no training to help them perform these complex tasks for their friend or loved one, two-thirds of whom had no home visits by a health care professional, Reinhard said.

Almost half of the family caregivers were working and most were women tasked with performing medical and nursing duties. One-third of family caregivers were younger than age 50 and 40 percent were between 50 and 64 years old. Adult children caring for their parents make up the largest group of family caregivers, followed by those caring for other relatives and those caring for spouses or partners, Reinhard said.

The majority of care recipients were women and 88 percent were over the age of 50; 40 percent were older than 80. Eighty-five percent of family caregivers reported recipients had chronic physical health conditions, such as stroke, musculoskeletal conditions and cardiac conditions, she added.

To view the report, go to aarp.org.