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‘This long goodbye is hell’

Adult day services provide stimulation for older Americans, and respite for full-time caregivers

PLATTSBURGH — Sally White helps her husband of 46 years get dressed, fed and on the bus for the short ride from their Plattsburgh, N.Y., home to Third Age Adult Day Center four mornings a week.

Preparing 74-year-old Rodger White to leave the house for the day can be a chore since he’s been in declining health for more than a decade and has severe memory loss.

“It’s like having a small child,” said Sally, 78. “This long goodbye is hell. I’m exhausted. When he’s at Third Age, I clean the house and try to get errands done.”

For thousands of older Americans like the Whites, Third Age Adult Day Center and similar adult day services provide safe, stimulating places for seniors who are frail, cognitively impaired, physically or intellectually challenged and give respite to their caregivers.

William Zagorski, chairman of the National Adult Day Services Association, estimates there are about 8,000 adult day service centers across the U.S. catering to people with varying needs who want to remain in their own homes.

More than half of these centers serve homebound seniors with cognitive disorders who need supervision and opportunities to socialize while their caregivers get temporary respite or time to work outside the home.

After raising four children and retiring from their teaching jobs, the Whites each began studying for the ministry. During their studies, Rodger suffered a brain bleed in 2013 and memory problems he’d been having for several years began to escalate.

Sally said his memory loss has stolen from her the intellectually sharp, active man she knew and the life they had planned as they grew old together.

To keep her husband in a safe environment while she handles household tasks and gets a break from being a full-time caretaker, Sally enrolled him at Third Age Adult Day Center in January 2022.

“I can’t put a price on what it’s done for us,” she said. “Rodger has a routine and a community there and I keep my sanity by getting the bills paid and keeping the house in good condition and tidy so it’s safe for him here.”

Adult day services are prevalent in areas across the country, particularly California, New England and southern states, such as Tennessee, which experienced a 20-percent increase in these programs in the past 13 months, Zagorski said.

Meanwhile, middle America and rural areas struggle to either staff or fill the centers with clients.

Adult day programs cost under $100 a day nationally, which is considerably less expensive than a nursing home. It’s one of the reasons Zagorski and organizations like the National Council on Aging (NCOA) are advocating for more support of senior day programs.

“Unfortunately, Medicare is not an option and that has been a barrier to its growth,” Zagorski said.

Medicaid covers about half the revenue collected for these services across the U.S. and Veterans Affairs is increasingly supporting it, but about 15 percent of users still have to pay out-of-pocket.

That may account for only about 237,400 older Americans participating in structured day programs, according to the Centers for Disease Control, even though adults 65 and older make up 18 percent of the U.S. population.

Sally White says she struggles to afford the roughly $2,200 a month for her husband to attend the program since the couple doesn’t qualify for Medicaid and, because of his health decline, she’s been solely responsible for handling all the bills and the stress they bring.

“Rodger was the math teacher and he did all the bills,” she said.

Transportation also poses a problem in accessing senior day programs in rural areas like Central Pennsylvania.

“It’s been my experience in 36 years that adult day services are not a concept that’s right for people here,” said Holly Kyle, director of the Area Agency on Aging serving Pennsylvania’s Snyder and Union counties.

Since 1987, 13 adult day centers have opened and closed in the two counties, which Kyle attributes to a lack of mass public transportation, cost and non-flexible hours.

“Many families want services in their home, want to take care of family members on their own or still equate it to a child-care setting,” she said.

The stigma of aging may also play a role in adult day programs being underused, said Georgia Goodman, director of Medicaid at LeadingAge which represents more than 5,400 nonprofit and mission-driven aging services.

“A lot of (older) people don’t seek services until they’re in a crisis,” she said, adding that earlier access could offer more preventative care.

Marilyn Vargo, 79, of Milton, Pa., has been attending VNA Caring Center in Shamokin, Pa., since February after her family discovered the program.

Vargo, who for years worked as an administrative assistant to several Bucknell University presidents, suffered a traumatic brain injury in a fall about five years ago and now has short-term memory loss and is unable to care for herself.

“It’s very difficult,” said her husband, Joe Vargo, 81.

Standing in the couple’s dining room filled with family photos and Christmas decorations he has yet to take down, Joe Vargo said, “VNA has helped in a lot of ways. She gets some socialization and she really likes the bus rides. I often ask her what she did in the day, but she can’t tell me.”

More than dancing and dominos VNA Caring Center is the only adult day services program for cognitively impaired seniors in the Susquehanna Valley. Full-day attendance, from 8:30 a.m. to 3:30 p.m. weekdays, costs $44, including meals. Although the center has the capacity for 19 clients, Director Angela Loeper said, only five clients are enrolled.

Another major hurdle to expanding access to adult day services, Zagorski said, is the lack of public awareness and research about the benefits of the service, which he said helps reduce depression, loneliness and isolation.

There’s been a nationwide effort to rebrand the program as adult day services, instead of day care, and distinguish it from child care or senior centers.

“We’re a lot more than dancing and dominos,” Zagorski said. “We do have fun and social activity is promoted, but we have cognitive-based activities, and physical games and range-of-motion exercises. Food insecurity is a massive problem for seniors and we offer nutrition.

“We help reduce falls and decrease medication errors because people are right there. We’re the best-kept secret in long-term care. We offer a holistic level of care that allows people to remain healthy and with friends.”

At VNA Caring Center in Central Pennsylvania, Loeper starts the day reading the newspaper aloud.

“We recently read that students at Our Lady of Lourdes will be performing ‘Finding Nemo,’ “ Loeper said as two patrons watched the animated film in anticipation of attending the school play.

Reading the newspaper is “vital to keeping them engaged. It opens up memories,” said Loeper of the daily activity. The center is filled with tables where clients can work on puzzles, paintings and arts and crafts. It also has space for daily exercise.

MemoryLane Care Services in Toledo, Ohio, serves about 34 people a day, despite having capacity for 50.

Attendance has fallen since the center reopened after being closed for nine months during the COVID-19 pandemic, said Director Salli Bollin.

“It is an underutilized service. A lot of family members and professionals don’t know it’s available or they don’t think their family member will want to be here,” she said. “Most people hear about it through word-of-mouth, but that’s a hard marketing strategy.”

Bollin has worked at the center since 1998 and has seen clients who’ve attended several times a week for as long as 16 years.

“As people get older and have more or different needs, we can adjust and help them remain in their own home,” she said.

In Elkhart County, Indiana, several adult day service programs cater to the community’s needs, said Tina Fraley, the chief financial officer and interim CEO of the Council On Aging in the Northern Indiana county.

“The senior population is going to explode,” Fraley said. “By 2030, there will be more seniors in our area than people under the age of 18.”

Fraley’s agency has been preparing to meet those needs since an increasing number of seniors will need to rely on relatives for their care.

That is going to lead to an increased demand for daily programs, she said, “but nationwide we are behind on it.”

Third Age Adult Day Program in Northern New York is the only center in the area serving memory impaired and developmentally disabled seniors on weekdays from 7 a.m. to 2 p.m. at a cost of $20 per hour, with transportation provided at an extra cost to clients within about a 20-mile range.

The center has operated since the 1990s, but has curbed its offerings since the pandemic, including no longer offering a daily meal, while continuing to provide activities to stimulate the mind and body and a weekly visit by clergy who deliver Holy Communion, Director Nicholas Drown said.

There’s capacity for 50 people, but only 15 are being served because of the difficulty retaining staff.

“We have a wait list of 45 to 50 people,” Drown said. “I get phone calls on a weekly basis.”

Staffing centers to work with the older population is a major challenge and the pandemic dealt an additional blow, said Kathleen Camero, senior director of the National Council on Aging (NCOA) Center for Healthy Aging.

“The pay is not that great in this sector,” Camero said.

“We expect to see increases in need for adult day services because of the (increasing) rates of Alzheimer’s and dementia and I wonder if we’ll be able to keep up with demand if we don’t recruit and pay better,” she said, citing the negative ramifications of people leaving the workforce and decreased productivity if the issue isn’t addressed.

It’s a sentiment echoed by Mary Michlovich, executive director of OPICA, an adult day service program in West Los Angeles, Ca.

“We need to bring an awareness that there is more support needed across the board. We have this aging tsunami coming toward us,” said Michlovich. “Everyone is living longer and they’re being diagnosed (with dementia-related issues) so much younger. The need has exploded but the funding support is just not there.”

At 81, Joe Vargo said he’s not able to keep up with the demand of owning the Milton, Pa., home he and his wife have lived and raised three children in since 1974. He’s considering moving them both into a nursing home soon.

Before Marilyn’s fall and brain injury, the Vargos never discussed how they would handle getting older together if their health failed.

“I oftentimes think about that,” he said. “We probably should have.”

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