This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group is supported by the Solutions Journalism Network.
The collaborative’s first series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.
When Ginni Jurkowski retired as a communications professor at SUNY Geneseo, she wanted to continue working with people and education. So, when she heard about the Partners in Caring Respite program in 2018, she jumped at the chance to help people who struggle with speech.
As a volunteer with the Partners in Caring Respite program, Jurkowski has paired with a handful of care recipients in the early stages of cognitive neurological disorders — like dementia — and has developed relationships with people she thinks are often forgotten about.
“When people aren’t in the best health, they’re disregarded. But working with them, I’ve learned to be patient, slow down and work around their limitations. They have a sense of humor and memories and lives,” said Jurkowski.
While Lifespan has been providing services for aging adults in Rochester for nearly 50 years, it wasn’t until 2015 that the organization decided to try something new.
What sets apart Lifespan’s Partners in Caring Respite program, which debuted in 2015 as part of the Finger Lakes Caregiver Institute, is that it’s a respite care program that pairs trained volunteers with people who are in the early stages of cognitive neurological disorders.
Companion programs improve psychological health through social interaction between volunteers and care recipients, according to a report by Americorps’ Senior Companion Program, which places volunteers with independent elderly individuals or caregiving families.
For family caregivers, respite care — which the National Institute of Aging defines as short-term relief for primary caregivers — is among the essential services to help them find time for themselves amid caring for a loved one.
“Family caregivers play a critical role in keeping this person alive, and what we saw (in the pandemic) was a magnified stress on family caregivers,” said Ann Marie Cook, CEO of Lifespan. “This respite model is so necessary to help that caregiver continue to do that job.”
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How Partners in Caring helps provide respite care and social time
Katy Allen, who has spearheaded the program since its inception, said that the Partners in Caring Respite program has a great impact on the caregiver and offers their loved one an opportunity to talk to someone new and create a meaningful relationship.
The Partners in Caring Respite program model is simple. Full-time staff members at the Finger Lakes Caregiver Institute recruit, screen, train and then assign volunteers to a client who needs downtime.
After training, volunteers choose how much time they spend with their partner and what activities they do, which Allen said are individually based, meaning that how they spend their time together depends on the ability of the client and the willingness of the volunteer.
“Our volunteers can choose to stay inside and watch a TV show or cook or play board games with the care receiver. We also have volunteers that go fishing, or go for a walk in the park, or go out and get lunch,” said Allen.
According to Allen, the program is not about placing professional caregivers with clients. Volunteers are not expected to perform duties such as bathroom assistance or medication management.
Partners in Caring Respite program is designed to mold around the volunteers’ schedules, meaning they can visit from once a week to every few weeks to even once a month.
“We currently have 5,000 hours in funding for this, and we have a waiting list of folks who want volunteers,” said Allen.
The program was started thanks to a grant from the Helen L. Morris Foundation — a local nonprofit that supports single women, children, and elderly individuals — which ended in 2019.
Currently, Lifespan receives $1.5 million from the New York State Department of Health for all their dementia caregiver services provided through the Finger Lakes Caregiver Institute. Allen said that the Partners in Caring program has an annual budget of just over $200,000 annually.
A professional evaluator does an annual inspection of the program and Cook and Allen said that they provide surveys for the caregivers and volunteers.
“It’s important to show how impactful this is for the volunteers, what are they gaining from it. We also interview the caregivers to understand the impact on the families,” said Allen.
There are also related activities, like the Life Conversations Project, which trains volunteers to help their clients with reminiscing so they can share their life stories.
These training and evaluations are possible thanks to the full-time staff Lifetime employs for Partners in Caring Respite programs, which includes trained professionals who help with coordinating with caregivers, volunteer outreach and support, respite management, and more.
Volunteers needed to continue Partners in Caring
Allen said that one of the most distinctive things about the program is that its volunteers are older adults and many of them are retirees.
They’re people like Jurkowski, who retired in 2018. Although she has participated in several Lifespan programs, it wasn’t until four years ago that she joined the respite program.
“When you think about doing respite, it’s not all about ‘what can I do for that person,’ but also that they do so much for me,” said Jurkowski.
Because she misses teaching, Jurkowski has been working diligently to fit the needs of each of the partners she’s paired with.
For a nonverbal client, she would use music, and on their off days, a robotic dog that responds to movements and would make the client happy. Another of her partners spoke and understood limited English but was also having a hard time remembering words in their native language, so Jurkowski would use Google translate to boost their memory. It worked, Jurkowski said.
Allen said that one of the biggest limitations the program faces is the lack of volunteers. During the recruitment process, some people don’t pass the screening, while others quit during the training.
“Our volunteer coordinators have to talk to 100 people to get five volunteers, and two might drop out,” said Allen.
Allen believes that finding volunteers is hard because many people can be faced with the realities of aging when working with individuals with memory disorders.
“We’re afraid to grow old and we see it as a negative. The idea of volunteering with an older adult, especially one with dementia, that feels frightening to people,” said Allen.
Before the pandemic, the Partners in Caring Respite program had 90 volunteers. When COVID-19 hit locally, the number went down to 22. Over two years later, the program has around 70 volunteers, and Allen said that over 60 families are waiting for a volunteer match.
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Adapting Partners in Caring through the COVID-19 pandemic
When the COVID-19 pandemic prompted changes to in-person activities in March of 2020, Jurkowski was worried that she would lose that connection she had made with one of her partners. She came up with creative solutions to maintain the relationship.
“For a while, we couldn’t visit, so I would leave gift baskets with products or would stand in their driveway and talk from afar, while also talking to family members over the phone,” said Jurkowski.
The pandemic’s effects of COVID on the program were major. Lifespan CEO Ann Marie Cook said that it felt like they had to start from scratch. Volunteers were afraid to go into people’s homes, and clients were afraid to have strangers come by.
To Lifespan, the impact of the pandemic was devastating because they lost a lot of potential families because two years is a long time for people with memory loss and their families.
“For families with members (who have memory) loss, two years is a lifetime. It’s difficult to break that bond — when we have to separate the volunteer when the person is too far gone,” said Cook.
Cook said that as we potentially emerge from the pandemic, many families who have avoided care will have more needs, and so would be unable to qualify for the Partners in Caring Respite program.
Allen said that when a memory disorder progresses, the needs of the client become too complicated for volunteers, and caregivers are advised to seek respite care with a professional trained in medical care.
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Expanding Partners in Caring to new communities
In its seventh year, the Partners in Caring respite program has expanded to four counties across the state, received federal funding, has served over 400 families and has over 70 volunteers on call. Most of them are in Monroe County, while Wayne, Livingston and Ontario have a median of six volunteers each.
Allen said that as part of the Helen L. Morris group’s original grant in 2015, the Partners in Caring Respite program staff had to develop a replication model, which has made it easier to try in other counties.
“Monroe County has a big city in it, but these other counties don’t. (The model) showed us the foundation of what you can easily translate to other places, and all the things you need to be mindful of in terms of small communities and their cultures,” said Allen.
Both Allen and Cook agreed that the ease with which this model can be repeated is crucial to helping smaller and rural communities have access to volunteers that are similar to those in need of care. Allen said organizations that seek to recreate this model can avoid the same growing pains that lifespan went through.
“The real goals and benefits of this program is that the caregiver and care receiver and volunteer develop a close relationship. Some would say they are friendships, and making that match is important,” said Allen.
Interested in volunteering?
Call: 585-244-8400, ext. 192
Email: volunteerflci@lifespanrochester.org
Natalia Rodríguez Medina is a bilingual reporter covering the Puerto Rican and Latino population for the Democrat and Chronicle in partnership with Report for America. Follow her on Twitter at @nataliarodmed or email her at nrodriguezmedina@gannett.com. You can support her work with a tax-deductible donation to Report for America.
