PORTLAND, Ore. - Despite a boom in assisted living and elder-care services, family members still handle most of the daily care-giving for older relatives. These "jobs" are worth $5.5 million in Oregon and $450 billion nationwide, according to a new report from AARP, affecting caregivers' health and financial security as they juggle these responsibilities.

About 90 percent of the in-home care needed by older adults is provided by family members, according to the report, which adds that as people live longer and families are smaller, there are fewer relatives to pitch in. And those who do often neglect their own needs, says study co-author Susan Reinhard, AARP senior vice president for public policy. At midlife, she notes, many people quit their jobs or go part-time to care for older relatives.

"We know that their retirement security is in jeopardy. This is true for both men and women that provide this kind of care: An average of over $300,000 in lost income and benefits over the caregiver's lifetime."

In Oregon, the report estimates 463,000 people are family caregivers, providing services that would otherwise cost more than $12 an hour. It suggests more support in a number of areas, such as better follow-up after hospital visits, flex-time policies on the job, and financial assistance and respite care for caregivers.

The average unpaid caregiver, the report says, is a 49-year-old woman, putting in about 20 hours a week - but that's just an average. Vicki Schmall, professor emeritus of gerontology at Oregon State University, says caregivers come in all ages. What they have in common, she says, is that most don't have the training or the support network to help them with their family member's health conditions.

"We have caregivers that are in their 80s and 90s, providing care to a spouse. And then sometimes, may have a 20-year-old or a teen-ager that is providing care to a family member."

Having an outside expert assess a family's situation and make recommendations about the kinds of help available is a good start, Schmall says. The state has an Aging and Disabilities Resource Connection website at adrcofor.org for caregivers. The AARP website, aarp.org, also contains information.

The report, "Valuing the Invaluable: The Growing Contributions and Costs of Family Caregiving," is online at www.aarp.org.


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Nursing homes across South Dakota will soon receive a boost in support, as part of the most recent legislative session.

Facilities caring for Medicaid recipients are reimbursed by the state for some of the cost. Reimbursement rates have been calculated based on patient needs, occupancy and funds available in the state budget. Last year, the South Dakota Legislature increased the rate from about 75% to 100%.

House Bill 1167 now allows the Medicaid reimbursement rate to be adjusted annually, to keep up with inflation and other changes.

Erik Nelson, advocacy director for AARP South Dakota, is glad lawmakers are giving nursing homes attention.

"We have seen a number of nursing homes close in recent years," Nelson pointed out. "Financial considerations were a factor in that, along with workforce and some other issues."

Since 2019, 15 nursing homes have closed across the state, with six of the remaining 98 on a federal list of facilities not meeting basic standards of care. In addition to a lack of funding, the average staff turnover rate is 54%.

State lawmakers also approved the use of $5 million in American Rescue Plan Act funding toward expanding telehealth services in facilities including nursing homes, allowing patients to receive some health care services remotely.

Nelson noted telehealth is one way to supply needed support.

"For not only the residents, but the family caregivers that are supporting their loved ones in the nursing homes," Nelson emphasized. "And of course, the staff of the nursing home that's in the community."

Census data show South Dakota's population is aging and by 2030, one-fifth of residents will be older than 65.

Meals on Wheels programs could be a powerful tool for addressing the needs of people living with dementia, according to a study from Ohio State University researchers.

The community-based program delivers weekly meals to food-insecure seniors.

Lisa Juckett, assistant professor of occupational therapy at Ohio State University, conducted interviews with caregivers, people living with dementia, and the staff of LifeCare Alliance, the largest Meals on Wheels provider in the state. She said the findings revealed delivery drivers are often a critical source of social interaction and an "extra set of eyes" on homebound individuals.

"That Meals on Wheels driver is then able to perform very brief but important wellness checks and safety checks," Juckett explained. "To make sure that meal is actually being delivered, the door is being answered."

According to Meals on Wheels America, last year more than 90,000 Ohio seniors received over eight million home-delivered meals through the program. More than 80% of people with dementia in the U.S. live at home, and an estimated 60% are unable to eat or prepare food on their own.

States rely on a combination of federal funding, private donations and fundraising agencies to keep local Meals on Wheels programs operating. Juckett added the findings come on the heels of Congress deciding to cut funding for the Older Americans Act, which allocates money to Meals on Wheels programs nationwide.

"Meals on Wheels programs are always on the chopping block, when it comes to federal budgets being adjusted every year," Juckett pointed out. "We need more advocacy efforts to validate or justify the importance of these programs."

According to the group Alzheimer's disease International, more than 55 million people around the world live with dementia, a number expected to double over the next two decades.

Advocates for people age 65 and older urged Colorado lawmakers to fully fund a program helping people remain in their homes and avoid placement in assisted living facilities.

Jayla Sanchez-Warren, director of the Area Agency on Aging for the Denver Regional Council of Governments, said home-based services cost under $2,000 dollars per year, on average, compared to $74,000 for nursing homes. Since most people cannot afford the nursing home charges, state and federal taxpayers have to pick up the bill after their savings are gone.

"It saves money for individuals, it saves money for the state, and it keeps people where they want to be; living in their own homes," Sanchez-Warren emphasized. "Someone who needs help with preparing meals and maybe showering should not have to go to a nursing home."

Sanchez-Warren noted adequately funding home-delivered meals, transportation, in-home assistance and similar services would cost the state $20 million. The number of people age 65 and older is projected to rise from 928,000 to 1.3 million by 2035, according to Colorado State Demography office data, outnumbering people 18 and under over the next three decades.

Federal support for community based services has dropped, and state-based funding is stuck at 2019 levels.

Sara Schueneman, state director of AARP Colorado, said demand has risen dramatically. Nearly eight in 10 Coloradans say they want to age in place in their communities.

"There is a growing population of older adults in the state of Colorado, and there is growing demand," Schueneman pointed out. "We are trying to support more people with less money because there is so much need."

Advocates urged lawmakers to increase funding by at least $5 million in the state's annual budget, and increase the amount year over year to ensure people can access services.

Sanchez-Warren added right now, their largest transportation provider has a 700 person waiting list. If someone needs to get to a doctor's appointment or a dialysis treatment, they have to wait at least two months for a ride.

"You can't get a home delivered meal right now," Sanchez-Warren stressed. "It used to be where you would come out of the hospital, and maybe your doctor said you should get home-delivered meals. And within a couple of days we could get you into a program and there would be a meal at your door. Not anymore, it's on a waiting list."