Caregivers reveal emotions in new AARP survey

Family caregivers experience fulfillment despite stress and feelings of being overwhelmed, according to a new survey from AARP.

About 91 percent of caregivers say they feel positive about helping a loved one, and it outweighs the negatives, the findings show.

“Changing roles can be difficult to navigate within families, especially when those changes happen quickly with little time to prepare,” said Amy Goyer, a caregiver expert and author of AARP’s “Juggling Life, Work, and Caregiving.”

The survey was conducted from late August to mid-September, with a national representative sample of 1,081 family caregivers aged 18 and older. The survey included 144 caregivers of Hispanic/Latino descent.

About 40 million Americans are providing care to a loved one, whether it is long term for an aging parent or short term for a sick spouse or child, AARP says. Most of the care is unpaid.

Family caregivers are an essential element of the fragmented health care system, and they often find themselves ill-prepared to take on these roles. But they often have no choice due skyrocketing long-term care services, AARP says.

Being a caregiver is stressful, and it is compounded by often having to sacrifice jobs and careers, along with incurring unpaid expenses from caring for a loved one.

Nearly half, or 18 million of the 40 million caregivers in the U.S., are doing so for individuals 65 and older, said Goyer, who spoke recently at a National Press Foundation conference in Washington, D.C., on aging issues. She has more than 30 years of expertise, and has dedicated much of her life caring for family members, most recently her father who has Alzheimer’s disease.

About 60 percent of caregivers are women, and the average age of a caregiver is 48. In turn, about seven percent of caregivers are over the age of 75.

“None of us do it perfectly,” she said. “Success is being there. Success is being resilient.”

The Alzheimer’s Support Network of Collier County sees and hears daily about the stress that caregivers face, and the network is a source of help.

“The stress that care partners face is enormous,” said Clarke Pollard, executive director of the network. “The stress comes from not knowing how to handle a disease process that is persistent, progressive, and without a cure. The stress come from grief and loss. It comes from the requisite hypervigilance — needing to be always alert and on guard.”

The local Alzheimer's network is working to build support services not only for families but also throughout our community, Pollard said.

“Alzheimer's disease and other forms of dementia are not just problems individuals face,” he said. “These are societal issues and demand a collaborative approach to care.”

In a 2015 report, AARP said the dollar value of unpaid caregiving exceeded $470 billion annually. That figure is close to the annual sales of Walmart, Goyer said.

The average out of pocket expenses incurred by caregivers is $12,000, which includes travel expenses, she said.

The typical caregiver spends 18 hours a week handling a multitude of tasks, which are increasingly complex as opposed to personal hygiene or helping to feed a loved one, she said. More than half are performing what she describes as “high burden care like handling injectable medications, feeding tubes, and wound care.

The recent AARP survey found 51 percent of caregivers feel stressed or worried, and 40 percent feel overwhelmed.

Still, more than say “they have experienced an unexpected joy” in being a caregiver, the survey shows.

Numerous lawmakers have proposed legislation to help relieve family caregivers, according to the National Alliance for Caregiving, based in Bethesda, Maryland.

The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act would require the Secretary of Health and Human Services to develop a strategy to recognize and support family caregivers and bring critical federal agencies in the fold, and make recommendations on national strategy. The legislation is sponsored by Sen. Susan Collins, R-Maine, and U.S. Rep. Gregg Harper, R-Mississippi.

The Americans Giving Care to Elders (AGE) Act would provide a tax credit to family caregivers of a parent or grandparent for up to $6,000 a year. The sponsors are U.S. Rep. Steve Israel, D-New York, and Sen. Amy Klobuchar, D-Minnesota.

(The Alzheimer’s Support Network is hosting a training, “Creating a Cognitively Kind Community,” for business owners, managers and employees to pledge to treat people with neurocognitive diseases with understanding. The event will feature, Teepa Snow, a leading dementia educator.The event is Monday, Nov. 20, from 10 a.m. to noon at Naples United Church of Christ, 5200 Crayton Road. Tickets are $50 per person. To reserve a seat, go to www.Support.Network or call 239-262-8388).