This story was originally published on The Buffalo News

Tom Zeeb was an accomplished architect who slipped into dementia shortly before he retired seven years ago, at 70.

His first years away from work involved lots of travel with his wife, Linda, mostly to see their children in New York City and Florida.

That slowed as his disease progressed and he became mostly nonverbal.

“There are no medications for what he has,” his wife said. “I just do it all. Probably the most frustrating part is when he tells me what he wants. I want to well up sometimes because I don’t know what it is he’s asking for.”

Linda Zeeb gets a break four hours a month, thanks to a free, somewhat unusual respite care program at the Southtowns Family YMCA in West Seneca.

The enCourage: Benefit for Both program serves those with mild to moderate dementia, who participate in exercise, lunch and other activities while caregivers stay on-site to use the facility or leave to run errands or relax.

The program is among 13 pilot projects funded through 2025 and designed to offer caregivers more useful tools as they navigate lives that challenge their own health and well-being.

“You don’t realize how little time caregivers have,” said Jilyana Baumgarden, wellness director of the Southtowns YMCA.

Other initiatives include neighborhood respite centers, a “mystery trip” program; in-home care and chore support; home modifications; and mobile respite care. Most have started. Others will do so in coming months.

The Philanthropic Initiative (TPI) manages the effort, which involves 58 organizations working in teams led by grant recipients in the Buffalo and Rochester regions, as well as the western suburbs of Detroit.

All are part of the Exhale Family Caregiver Initiative, funded with $2.6 million from the Ralph C. Wilson Jr. Foundation, Health Foundation for Western and Central New York and Ann Arbor Area Community Foundation.

“Inherent in funding these kinds of projects are some risks,” said Amber Slichta, vice president for programs and learning with the Wilson Foundation. “We’re really excited about all of them, and I think we know that some may take off and click better than others. We will see over time which ones really take off, and maybe look to replicate them and scale them even more.”

Related projects bubbled up from a 2019 workshop and further discussions that included funders and organizations focused on the needs of caregivers for older adults, said Ken Genewick, senior program officer for caregiving with the Health Foundation and leader of the Exhale program.

“There was a huge emphasis on hearing from caregivers directly,” Genewick said. “This is a way for communities and people to get together to not only identify issues and problems, but creative solutions to them.

“One piece of data that surprised everyone,” he said, “is when caregivers were asked, ‘If you had a chance to have a break or some respite, would you want to do it alone?’ And surprisingly, 50% said, ‘No, we want to do something with our loved ones,’ so that really had an impact on the pilot projects.”

Three related projects launched in the Buffalo region before the Covid-19 pandemic temporarily slowed the momentum. One connected caregivers online in Cattaraugus and Wyoming counties. Another brought young people and older adults together in respite care in the Southern Tier. The third offered “memory cafes” with live music at the West Falls Center for the Arts.

Funding for the newest efforts in Western New York totals nearly $1.8 million; in Washtenaw County, Mich., nearly $800,000.

Welcome relief

Staff and trained volunteers run the respite program at the Southtowns Y.

A recent respite care session started with the Pledge of Allegiance, singing “This Land is Your Land” and seated ball exercises. Paws for Love handler Diane Morse then encouraged participants to visit with a golden retriever named Crystal from the SPCA Serving Erie County. Lunch was followed by birdhouse painting.

The program runs the first Wednesday of each month. Up to a dozen people in need of care may participate. Most can walk, but some use walkers or wheelchairs.

“On average, we’ve been getting nine to 10,” said Sue Kincaid, program administrator. Caregivers can reach out to Kincaid, who walks them through a registration process for the nonmedical program. Call 716-674-9622.

The YMCA partnered with the Alzheimer’s Association Western New York Chapter to start the program after staff began to notice behavioral changes in some longtime members, including their inability to keep up with their Y activities.

It fizzled during pandemic lockdowns and re-emerged last November.

Some have returned to the program, Baumgarden said, but because dementia is a progressive disease that lacks a cure, others were in advanced stages or had died.

Caregivers are welcome to take a fitness class, swim or use the exercise equipment “to keep their mobility going,” Kincaid said, but almost all at this point have chosen to leave their loved ones in the capable hands of trained staff and volunteers and spend time somewhere else.

The program has become a temporary haven for Thomas Zeeb and a relief for his wife, who appreciates support from staff, volunteers and fellow caregivers, who share perspective and information about available resources.

“The best information I have is from here,” Linda Zeeb said. “And while my husband is here meeting people, I’ll go out to lunch or do some things that I just want to take care of by myself.”

Those at the Y who care for Zeeb in his wife’s absence “do in a very loving, compassionate way,” Kincaid said. “Tom doesn’t need to sit here. He needs to be in the group. We see him. He can interact.”

Strengths and challenges

“The strength of the program is really the variety of the activities,” Baumgarden said. “It’s not just sitting and talking. There’s always a social activity. There’s always a cognitive activity, a physical activity. Most of the caregivers state that after the day of the program, their loved one is more engaged at home and has more energy, when you would think they would be more tired.”

Demand sometimes outstrips the number of slots, however.

“We’d like to get to the point of offering this twice a month,” Baumgarden said.

The staff also has the unpleasant task of telling applicants their loved one is ineligible to start, or must stop the program, if they have medical needs, must have help using the bathroom or lose considerable interest in activities. 

“Part of our bigger picture plan,” Baumgarden said, “is to offer concurrent caregiver programs once per quarter, something specific to the caregivers while their loved one is being cared for. Do they have the opportunity to meet with an Alzheimer’s Association representative here in the building? Do they have an opportunity to meet with an elder law attorney? Do they have the opportunity to just sit with cards in front of them and talk to other caregivers to build camaraderie?”

Another challenge, which surfaced during the first focus group, is pinning many caregivers down when it comes to their greatest needs.

“They’re often like, ‘I don’t know.’ They don’t think they need anything because they’re too busy,” Baumgarden said. 

Volunteers are key

Every program participant with dementia has at least one volunteer with them.

“We typically keep them matched month to month, so they get to know their person,” Baumgarden said.

Sisters Anne Marie Grover and Beth Hertel, both from West Seneca, spent time with Zeeb during a recent respite session.

Grover has lived on the same street as him for 45 years, and once cared for a good friend with dementia. She and other volunteers have taken Alzheimer’s Association training that provided tips about how to talk effectively with someone who has the condition and can sometimes lose track of things and become frustrated.

“I’ve been a hospice volunteer for 25 years,” she said. “I just believe in volunteering. Everybody should volunteer.”

Hertel helps care for a woman with dementia, including taking her regularly for dialysis.

“I know what it’s like to be a caregiver, so it’s so nice to have respite for them,” she said. “Sometimes the caregivers are forgotten. They need some time off for themselves.”

Baumgarden is heartened by all of the pilot programs because she and other leaders at the Southtowns YMCA see firsthand that more support is needed as baby boomers continue to age.

“We know that caregivers try to find breaks in different ways,” she said, “whether it’s a musical memories cafe or an art museum or something at Cradle Beach. These are all expanding ways to give caregivers opportunities.”

(Editor’s note: New York & Michigan Solutions Journalism Collaborative is supported by the Ralph C. Wilson, Jr. Foundation and the Health Foundation for Central and Western New York.)

Pilot projects

Exhale, which supports family caregivers of older adults, awarded 10 grants in Western New York and three in Washtenaw County, Mich.

Buffalo Niagara

Virtual inclusive technology (VITAlzWNY): The Alzheimer’s Association of WNY aims to improve caregiver well-being by delivering respite, engagement, support and education free from any location using computer tablets and content.

Erie County Neighborhoods Dual Caregiver-Receiver Respite and Mystery Trip Program: The Buffalo Federation of Neighborhood Centers and several partners will offer respite and enrichment programs at senior centers while caregivers have up to four hours of free time. Seasonal “Mystery Trips” will offer caregivers full- or half-day outings.

Weekend Respite Program: Catholic Health Continuing Care Foundation and its partners will provide a weekend respite program on Saturdays at the LIFE/PACE Day Center at Villa Maria in Cheektowaga. Family caregivers of older adults can spend time on campus in caregiver education classes or four hours off campus tending to other needs. Catholic Health can provide transportation.

Pathways for Caregivers: A respite program for caregivers and their loved ones offered on the Cradle Beach campus along Lake Erie in Angola. Family caregivers can stay on campus or leave. A caregiver support group is offered.

Mobile Respite Care Program: Healthy Alternatives through Healing Arts will offer mobile respite services to caregivers in community settings throughout Erie County. Caregivers can participate in yoga, QiGong, acupressure, meditation and mindfulness, Reiki, aromatherapy and other classes designed to reduce stress.

enCourage, Benefit for Both: This nonmedical adult day respite program is for older adults with early to moderate dementia and their caregivers at the Southtowns Family YMCA in West Seneca.

Caregivers Revitalize: This program provides caregiver respite services at the Orleans County YMCA in Medina and Community Center in Holley; it will do so in a new Genesee County YMCA in Batavia.

Rochester region

Caring for Caregivers: The American Cancer Society leads this project to create a central hub of information and resources to guide cancer patient caregivers to respite and support opportunities, including with a program website and Caregiving 101 curriculum that addresses cancer caregivers’ primary concerns.

ROC Respite Program: Lifespan of Greater Rochester, St. John Fisher University, and the New York State Caregiving & Respite Coalition aim to develop trained student and community respite service volunteers to provide adult day drop-in respite care and other support to older adults in southwest Rochester.

Dementia Resource Center: This St. John’s Home Foundation program will offer caregivers relief opportunities for adult day care drop-off respite services, a spa and fitness facility, a pool, beauty salon services and a resource library. Caregivers will have access to a care manager and center coordinator who can help schedule activities, training programs for caregivers, and opportunities to engage a loved one in an activity that both may be missing, such as concerts, games and spiritual services.

Washtenaw County

Ease the Day: Chelsea Senior Center will serve as a respite hub for caregivers and their older adult loved ones in Western Washtenaw County. The center and several partner organizations will offer on-site and in-home caregiver support.

Respite Alternatives: The Washtenaw Support Network for Caregivers designed this program, which includes inviting caregivers of those with dementia to sign up their loved one for a group activity at the University of Michigan Silver Club. Activities include art, music, fitness and games led by staff trained in dementia care. Other programs include in-home professional respite care; a volunteer program that pairs families with respite visits at home; and plans to design and offer eight to 10 free annual events and outings for family caregivers, including transportation.

Ypsilanti Meals on Wheels Care on Wheels Program: This program provides in-home caregiver respite, chore support, home modifications and clinical occupational therapy for older adult care recipients.

For more information on Exhale, visit exhaleforcaregivers.org