Adult day care - a respite and a life-changer

Jan. 13—I n 2015, Jack McKeon was diagnosed with Alzheimer's disease — a mind-robbing illness that can steal speech, memory, movement and control of body functions while dissolving recognition of friends' and loved ones' faces.

Today, at age 78, the former economics and finance professor has a complete social life and a built-in extended family at the Mount Washington Valley Adult Day Center. For Jack, it's like day camp, a welcoming retreat with activities and guest entertainers — plus nurses with the patience to answer his repetitive questions.

Jack likes people. He also likes to garden. His routine includes watering plants around the center, which includes a reading room, a screening area, a café with cozy tables, nooks for artmaking, therapeutic baths and a patio with gardens, sculpture, and walkways with mountain views.

It also furnishes something priceless: sincere acceptance in a community of peers.

"He has people to chat with. He has friends. He looks in the mirror and sees himself as a 25-year-old," said his wife, Janet, 71. On days he's heading to the center, "he's up and ready to go."

For elders with with dementia and other disabling conditions, adult day centers are comfort zones at a time of life when safety and enjoyment are fleeting. But in most of New Hampshire, these oases are rare, and almost everywhere, they are underutilized.

In the nation's second-oldest state, where it's estimated that 26.3% of the population will be 60 or older in seven years, Alzheimer's disease — not including other forms of dementia or disabling illness — is expected to affect 32,000 people 65 and older by 2025, according to the Alzheimer's Association.

Not counted are the countless family members who will care for them at home, bearing what amounts to a 24/7 burden in response to a calling both loving and painful. In 2021, a study cited by the Alzheimer's Association estimated that 58,000 caregivers across New Hampshire were performing a total of 83 million hours of care.

Jack McKeon's "whole day can be taken up with finding something he used minutes ago," said his wife, who worked in childhood education in Massachusetts until the couple retired. Repetitive questions tax patience, and nonstop vigilance is exhausting and impossible to sustain.

Once, when she took a quick trip to a local store, police found Jack walking alone on a covered bridge. When she arrived, he was smiling and chatting with the officers.

"He's gone missing a few times on me," she said.

A less-pricey option

In the Granite State, there's a brittle imbalance.

For an expanding percentage of residents, especially in COVID's aftermath and amid ongoing workforce shortages, nursing home beds are in tight supply, assisted living may be financially out of reach or unavailable because of one's condition, and home health aides can cost roughly $35 a hour — a stretch for elders without hefty savings from lifetime earnings or insurance that pays for long-term care.

Compared with other options, adult day care in New Hampshire is a bargain at $75 to $95 a day, said Laurie Duff, who heads senior services for Easterseals New Hampshire, which operates adult day centers in Manchester and Rochester.

For the McKeons and untold others, the centers are a blessing.

"They're getting peer-to-peer interaction, ongoing support" plus personal care, a meal and snacks, and medical supervision, said Melissa Grenier, New Hampshire's regional director of the Alzheimer's Association. It's adjunct relief for their caregivers: "They lean on that for a break."

"I used to think I have to be there for him every minute," said Linda Shamberger, 74, whose 78-year-old husband developed vascular dementia after two strokes.

He now attends Mount Washington Adult Day Center twice a week, while Linda runs errands and goes to her own appointments. "It's given me the opportunity to get things done, including clean. I'm happy he's found something he's happy doing."

An underused resource

Despite its mission and value, adult day care is underused across New Hampshire, operating at 25% to 50% capacity since COVID — even in populous areas such as Manchester, Nashua and Salem, according to Duff, who also is president of the New Hampshire Adult Day Services Association.

Adult day care is scarce or nonexistent in the state's northern two thirds, where older adults make up a higher percentage of the population. That includes two of the state's oldest counties, Carroll and Coos — and many rural areas where social services are hard to access.

At least half of the state's 15 licensed adult day center are located within a half-hour drive of the Massachusetts border. Six are in Hillsborough County, with two in Rockingham, two in Cheshire and one each in Merrimack, Strafford and Carroll counties.

"We didn't have enough pre-pandemic. We certainly don't have enough post-pandemic," Grenier said.

"There is a great need for adult day centers in this state," said Lynn Coyle, director of the Mount Washington Valley Adult Day Center, the only facility of its kind north of Concord. The center serves vacationers as well as year-round residents, including some from Maine.

"There should be more of them," said Shamberger. "Everyone gets a lot out of it — including me."

A growing problem

In New Hampshire, aging experts predict that demand for care from millennials eventually will outstrip demand from baby boomers.

"We project and anticipate there will be a growing need for programs like adult day care, and more individuals needing care over time," said Wendy Aultman, chief of the Bureau of Elderly and Adult Services at the state's Department of Health and Human Services.

It's a powder keg problem, often overshadowed by more pressing health and social crises. New Hampshire's average life expectancy is 79, the country's fourth-highest, while its expenditure on health care is among the lowest nationwide, according to current surveys.

The population at adult day care includes people with disabilities, some who are in their 40s. At Easterseals in Manchester, some people in adult day care have been coming for 22 years.

In the future, Jack McKeon may need residential care — especially when his wife can no longer lift him — and he no longer recognizes her and grows increasingly agitated, frustrated or helpless beyond what she can handle.

Now, while he's at "camp," Janet swims with friends at a pool in North Conway — a recharging antidote to her burnout. She also attends the center's support group for caregivers, which is open to the community.

For Jack, the center remains a nexus of self-esteem and purpose.

"He's constantly excited about something he wants to show me," said Janet, including his coloring projects in an adult coloring book, which she displays at home. He also enjoys walking with an elderly companion he's gotten to know there.

A struggle to help

Isolation — the bane of healthy aging — became a pandemic for seniors long before COVID, according to aging experts. But getting elders to go to adult day care continues to be a struggle.

Easterseals Adult Day Care in Manchester served 180 people before COVID. Now the number is 40. At Easterseals in Rochester, ADC enrollment dropped from 35 to 13. At other centers, the drop is similar.

There is a kaleidoscope of reasons, including the tendency of people with cognitive decline to isolate, a general reluctance to seek help, lingering fears about gathering in person, stigma around the name "adult day care," and family caregivers' feelings of duty and guilt.

"Families think, 'I can do this. I can do this.' They get to an almost-breaking point. Instead of reaching out, they say, 'It's my mom. It's my father. It's my spouse," said Coyle at the Mount Washington Valley Adult Day Center. "They feel this great responsibility, then finally get to the point where they just can't do it anymore."

"As adults living with adult children, they're grappling with 'How can I live my life and still keep my mother and father safe?'" said Nzenalu Obinelo, a former administrator at Gateways Adult Day Service Program in Hudson.

It can be a challenge convincing caregivers. "This is a big step for him. I don't know if he's ready yet," is a common remark, said Penny Gagne, an administrator and part-owner of Adult Day Care of Nashua.

To increase enrollment, Gagne has advertised in church bulletins, magazines and newspapers. "My best ad is on the back of one of the Nashua transit buses," which attracts caregivers stopped in traffic. "I don't think people are aware that this is an option."

The reasons to go

"For the most part, folks aren't aware of what's offered or they don't believe it's time," said Norman Cloutier, president of the Betty C. Ketchum Foundation, which created the Mount Washington Valley center and supports it financially through grants and fundraising. The center offers aid to families to defray attendance costs and provides transportation for residents of surrounding communities.

Socialization is one of the most important reasons to go, clients and their advocates say.

"Socialization is so important because loneliness will kill somebody. It's true, not just for people with dementia," said Maria Camertengo, an administrator at Silverthorne Adult Day Care Center in Salem. "Just talking to people and saying hello. It makes people happier, and whatever you're doing is more fulfilling.

"We try to match people of like abilities and interests," Camertengo said. "We try to get to know them and where they're at at this point in their lives, and make sure they have a friend here."

"We really are their extended family," said Duff at Easterseals New Hampshire. "There's a high need for a place where folks with dementia can spend the day. People have that misconception that we're all about playing bingo. If we do play bingo, it's for a purpose. It's helps with fine motor. It helps with memory."

Studies show that participation in adult day care decreases hospital and emergency room visits. The health ravages of loneliness can be equivalent to smoking 15 cigarettes a day, she said.

"We can't prevent aging, or someone from eventually needing skilled nursing," said Cloutier at the Mount Washington Valley center. "But if we do our job, we can keep people in their homes longer."

rbaker@unionleader.com