Collaborative Research Grants Help Bring Spiritual Lift to People with Dementia

Collaborative Research Grants Help Bring Spiritual Lift to People with Dementia

Since 2016, the Alzheimer's Association and Women’s Alzheimer’s Movement at Cleveland Clinic (WAM) have partnered on funding initiatives that support women in science and grants focused on exploring sex differences in Alzheimer’s. When the COVID-19 pandemic struck, the Alzheimer's Association and WAM provided grant funding to several researchers to ensure their critical investigations were able to progress during this challenging time. This article is one of three in a series exploring the impact of their work.

Fayron Epps, PhD, conducting a workshop 

Black Americans are twice as likely than their white counterparts to experience Alzheimer’s disease and other types of dementia – a statistic that Fayron Epps, PhD, has not stopped thinking about since 2012, when she first came across it in report published by the Alzheimer’s Association.

“I was shocked,” admitted Dr. Epps, associate professor at the Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta. “Seeing how communities of color were disproportionately impacted by dementia was very alarming to me, even as a healthcare professional. It really helped me drill down my area of research.” She opted to study dementia as a postgraduate student and has since made Alzheimer’s disease and dementia the focus of her life’s work.

“In the Black community, we tend to experience more vascular dementia due to a higher prevalence of cardiovascular disease,” Dr. Epps said. But, she cautioned, it’s more complicated than that. “I think it’s a group of things that contribute to our higher risk … lifestyle behaviors, our eating habits, not having access to the healthcare that we should have … not receiving the right treatments … and it’s not just on the individual; I think it’s also on the system.”

A current project, funded by a grant from the Alzheimer’s Association, is allowing Dr. Epps and her team of investigators to explore ways to enrich the spiritual and communal lives of people with dementia and the people who care for them. She hopes to find ways for people affected by the disease to get more meaning from church services and to find comfort in the church community. Finding things to do together, ideally activities tailored to that person, is effective treatment – much better than letting them watch TV or sit at the kitchen table alone, Dr. Epps explained.

Dr. Epps brings considerable practical experience to her research, having held nursing and leadership posts in nursing homes and managed care settings, but she insists the effort takes a dedicated team.  

“I’m a community-engaged researcher because I can’t do this alone,” she said. “1 Corinthians 13:7 says, ‘Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.’ And that’s our theme when we go out in the community. That’s my theme when I’m developing my research programs and testing them.”

In 2019, Dr. Epps founded the Faith Village Research Lab, a nonprofit dedicated to providing African American caregivers, families and faith communities with the tools they need to more easily and comfortably access care, education, and research resources related to dementia. Her lab, located at Emory’s nursing school, partners with more than 45 African American faith communities in 10 states.

To participate, each organization must commit to 16 initiatives, which include training church leaders, making church buildings more accessible, creating special worship services for memory-impaired parishioners, finding new ways to make patients and families feel more accepted, and offering memory screenings, coffee hours, home visits and respite care.

“When I started this work, very few Black faith leaders knew what dementia was or what was entailed in the journey for a person living with dementia – and also for their caregiver or care partner,” Dr. Epps said. “Now, they’re speaking about dementia caregiving from the pulpit, which is amazing.” When church leaders have knowledge and resources, they won’t turn people away, she explained. “That’s very, very key. … It’s become a movement. Many churches have joined us.” 

Most gratifying to Dr. Epps is when people reach out to her to participate in the research, to help fund the lab or to just say thank you. “They’ll tell me, ‘My father had stopped going to church, stopped engaging, but by us participating in your research, we were able to give him back something he enjoyed doing,’” she said. “Or, ‘Now my husband trusts me again … because I didn’t realize how busy I was, and I really wasn’t taking the time to just be with him.’ And that’s what keeps me going.”

During the COVID-19 pandemic, Dr. Epps and the Alzheimer’s Association had to pivot. Through a grant from the Women’s Alzheimer’s Movement (WAM) – in partnership with Cleveland Clinic – the team moved their worship services and observational study online.

“We saw that the customized services, each six- to 10-minutes long, improved the dyadic relationship between the primary care partner and their person living with dementia,” Dr. Epps said. Findings also showed that caregivers’ perception of their own role heightened during the study.

“We observed such positive experiences of these families coming together, holding hands while they’re watching services or singing together. … One caregiver said, ‘I did not know I needed to be still. I didn’t know I needed these 10 minutes just to pause and reset.’ She thought this was for her mom, but then she realized … it made a big difference for her.”

Another surprise for research team members was the very positive lingering effect. “After the worship services, participants noticed their mom or their spouse or partner were still in good spirits … often humming the songs (from the service),” Dr. Epps said. She also shared that the church leader who created the worship services for the study went on to develop more services on his own.

Dr. Epps uses the video recorded services to train other leaders. Each faith community can customize the program to meet the needs of their own congregations. The “live” dementia-friendly services, 75-minutes in length, are continuing as well, she shared.

The study was published, and its findings are being included in other projects, according to Dr. Epps, who intends to continue her work indefinitely to ensure “families with strong religious or faith backgrounds have access to resources … and that Black caregivers are empowered to navigate this system and support their family member living with dementia.”

Learn more about the Women’s Alzheimer's Movement at Cleveland Clinic here.

Catalyst Grant Project Brings Comfort and Compassion to Hospitalized Veterans

Catalyst Grant Project Brings Comfort and Compassion to Hospitalized Veterans

There is little in life that can compare to the sense of being known: deeply, truly – and especially by one’s peers. And nowhere does that hold truer than for military vets.

“One of the great realizations of the 20th century is the power of people in like situations to help one another,” explains Rabbi Susan Stone, director of spiritual care at Cleveland Clinic’s Hillcrest Hospital. “Alcoholics Anonymous is a great example of that; we also see it in support groups for cancer survivors. But especially for our vets, there is great comfort in being with people who share your experience. It’s one person you don’t have to explain yourself to.”

That understanding was part of the impetus behind Rabbi Stone’s decision to apply for a 2023 Catalyst Grant, a one-year grant program designed by the Cleveland Clinic to help caregivers become champions for ideas that can deliver high quality, compassionate care for patients and communities. One hundred percent of gifts made to the program through Cleveland Clinic Annual Fund campaigns goes to catalyzing projects that expand patient support services, lay groundwork for medical breakthroughs, and implement health and wellness programs.

Titled “We Honor Our Vets,” Rabbi Stone’s proposal contained simple but impactful goals: to provide better care for military veterans by identifying them upon admission; to develop appropriate forms of recognition for their service; and to ensure that, unless desired, no veteran at any Cleveland Clinic facility would die alone. Her proposal was awarded full funding for the July 2023 through June 2024 period.

The rabbi’s insight into veterans’ needs came from several sources, including her professional training, a deep dive into the related literature and her own personal experience. “I’m the daughter, wife and mother of veterans,” she says, “and I know that there is just something about ‘being with your people’ that brings comfort.”

That comfort is especially important for those who are hospitalized, she adds. “I remind myself every morning that I’m going to work in a place where nobody wants to be. I don’t care what the circumstances of your hospitalization are. If you are coming here, your life has changed forever.

“So, if we can provide a stopping point – a little moment of recognition – that allows that person to bring himself or herself more fully into the space that they’re in, I believe that goes a very long way toward improving their care.”

Rabbi Stone also points out that, for many military vets, their time of service was “the single most important factor in their lives. And they bring that identity with them into all circumstances – while not necessarily knowing how that part of themself will be received.” At some level, they may feel afraid that their service will be discounted or diminished, or that they might even be disliked for having served, she adds. “So, again, recognition and appreciation go a very long way toward providing affirmation, relief and compassionate care.”

So far, the initiatives taken to support the grant’s goals have included everything from arranging supportive conversations with caregivers who are also vets to organizing end-of-life recognition and final salutes. Members of the Cleveland Clinic’s Military Veterans’ Employee Resource Group (MVERG) are often involved in these contacts.

Of course, all those initiatives begin with the most basic step of all: identifying vets upon admission – a process that, prior to this grant, had not been a routine part of the intake process. Now, says Rabbi Stone, every patient over the age of 18 is asked, ‘Do you have military service of which we should be aware?” Then, a list of those who answer in the affirmative is made available to all caregivers every morning.

Equally important, the hospital has also identified caregivers who are vets, many of whom are part of MVERG. Making that connection has proven powerful, says Rabbi Stone.

“We had a vet last week – a former Marine – who was incredibly anxious,” she recalls. “He was facing some surgery and just couldn’t stay in his own skin. We reached out to one of our ombudsmen who was also a Marine, and suggested she pay him a visit. Turns out, they had a great conversation, one Marine to another.” That shared moment was key, Rabbi Stone says, and the patient’s surgery proceeded without incident.

Just as important, the rabbi notes, is the fact that caregivers are proud to be involved. “What really helped sell me on this idea was seeing how good our caregivers feel about being part of this. They feel like they have made a positive difference in a patient’s life, and that is such a good feeling. That sort of sealed the deal for me.”

Other forms of veteran recognition include placing small American flags on vets’ doors, distributing flag pins and stars cut from decommissioned flags, and handing out Cleveland Clinic challenge coins. Those challenge coins have proved especially meaningful to the vets, says Rabbi Stone.

As powerful symbols of camaraderie and appreciation, challenge coins have long been used to mark the strong bonds that develop between members of the military, Rabbi Stone explains. “They’re an important part of military culture, often passed during a handshake to mark a job well done,” she notes. “The vets react to them strongly. They remember the coins’ significance from their time in the service and it means something to them that they have been recognized in that fashion.”

Grant monies were used to create the special Cleveland Clinic challenge coins, she adds, and caregivers may hand them out at their discretion, including during end-of-life recognitions.

“Researching the topic of final salutes really moved me,” the rabbi admits. “The desires of veterans at that time are highly individualized, of course, but it’s not uncommon that there may be a moral injury that they’ve never talked about before, but they are willing to talk about now. Many times, a patient will say to me, ‘I feel guilty.’”

While the conversation that follows may be intense, engaging in it is another way for caregivers to show they appreciate the patient’s reality, Rabbi Stone says. “If somebody has carried that emotion all these years, we need to be aware of that and ready to handle what may follow.” Beyond bringing emotional relief to the vet, such conversations forge a bond, she adds, that can ease end-of-life distress.

For other veterans approaching the end of life, special recognitions may take place. For example, with the consent of the veteran and the family, Rabbi Stone says a caregiver/veteran may approach the patient’s bedside and pin on an American flag. “Then they exchange a final salute,” she explains.

While such end-of-life recognitions can be tough, they are also healing, Rabbi Stone says. “Just by saying that we’d like to offer your husband, or father, or sister a final salute, we help the family recognize the reality of what is really happening.”

And that’s a good thing, she affirms. “What we can give people at the end of their life is an appreciation of who they are, an assurance that they will be remembered, and that what they did matters.”

It’s simply a matter of honor, Rabbi Stone says, and – thanks to the Catalyst Grant award – it is a process that is spreading throughout the hospitals of the Cleveland Clinic network. “I can’t speak for how each hospital does it, but I know it is very widely practiced,” she says, adding that her hope is that, by the time the grant expires, the hospitals will have found enough value in the program to continue it.

“We couldn’t have done it without the Catalyst Grant,” Rabbi Stone says. “It’s not just that we received the money to create things like the challenge coins. It’s that the Cleveland Clinic thought this program was important enough to fund.”

That validation has been crucial, says the rabbi.

“When you’ve got the weight of an institution like the Cleveland Clinic behind you,” she concludes, “that’s how things get done.”

Derby Day Soirée Hits the Trifecta of Fun

Derby Day Soirée Hits the Trifecta of Fun

A record-high $4 million was raised at the Derby Day Soirée, Cleveland Clinic Children’s annual fundraising event to support lifesaving programs and advance pediatric research.

Derby Day Soirée is the signature fundraising event for Cleveland Clinic Children’s, which has raised more than $20 million since its inception in 1990. Over 600 guests attended this year’s sold-out event, held on May 4 at the Huntington Convention Center of Cleveland.

“We are grateful to everyone involved in making this year a record-breaking fundraising event for Cleveland Clinic Children’s,” says Rita Pappas, MD, Interim Chief of Cleveland Clinic Children’s. “We are committed to ensuring children’s survival and nurturing their growth so that they are empowered to embrace life to the fullest. This milestone is a testament to our dedication to advancing pediatric healthcare and research. Together, we are not only transforming patient care but shaping a healthier future for generations to come.”

Cleveland Clinic Children’s Derby Day Soirée – presented by the Cafaro Foundation, Cleveland Cavaliers, Cleveland Superstars, The Fedeli Family Foundation and Scala Family Foundation – featured a viewing of the 150th Kentucky Derby and heartfelt stories of how raised funds have supported lifesaving care throughout the year. The event's honorary chair was Umberto Fedeli, with special honoree and longtime supporter of Cleveland Clinic Children’s, Eddie J. DeBartolo Jr., and his family.

The evening included remarks from Tom Mihaljevic, MD, Cleveland Clinic CEO and President, and Morton L. Mandel CEO Chair, Beri Ridgeway, MD, Enterprise Chief of Staff at Cleveland Clinic, and special tribute videos for Mr. DeBartolo, caregivers, and patients and their families. Special guest, former San Francisco 49ers quarterback Joe Montana, surprised Mr. DeBartolo, who owns the team, with his attendance and support.

The money raised helps support the latest advances in pediatric care, research in all the specialties provided at Cleveland Clinic Children's and innovative programs such as art and music therapy.

The 2025 Derby Day Soirée is scheduled for May 3. Follow @CleClinicKids on Twitter for the latest information about Cleveland Clinic Children’s.

A Life of Service Brings Joy to Treasure Coast Philanthropist

A Life of Service Brings Joy to Treasure Coast Philanthropist

I slept and dreamt that life was joy. I awoke and saw that life was service. I acted and behold, service was joy.”

These words, by poet and Nobel laureate Rabindranath Tagore, are a favorite of philanthropist Gytha Von Aldenbruck. They also capture how she lives her life, finding joy through service to others.

A Treasure Coast resident for nearly 50 years, Gytha has left her mark on many local nonprofits over the years, including as a financial supporter and Advisory Board Member for the Cleveland Clinic Martin Health Foundation.

“I’m an enthusiastic supporter of Cleveland Clinic Martin Health and was delighted when I learned about the integration with Martin Health,” says Gytha, who served on the local health system’s Investment Committee before it joined Cleveland Clinic. “As a patient and the loved one of a former patient, I’m even more grateful that Cleveland Clinic is part of our community.”

It’s that personal experience and dedication that has made Gytha a fierce advocate for Cleveland Clinic Martin Health and for the access it provides to high quality healthcare for the region.

Trailblazing stockbroker

Gytha moved to Florida in 1976 after graduating with a business degree from West Virginia Wesleyan College. She began her career in financial services as E.F. Hutton’s first female stockbroker in Stuart, retiring in 2005 as a First Vice President at Morgan Stanley, where she was recognized as a member of the prestigious Directors Club.

Most of those years and since have been shared with the love of her life, her husband Dennis. Their philanthropy is a team effort and often comes through their donor-advised fund at The Community Foundation Martin – St. Lucie.

The skills that made Gytha so successful professionally have served her well in her volunteer pursuits and as an ambassador for organizations she holds near and dear. Today she works to inspire and encourage others to support nonprofits that reflect their values.

And when Gytha speaks, people listen.

Joy in service

It helps that Gytha has led by example. A stalwart elder care advocate, Gytha volunteered for many years with Memory Bridge, an organization dedicated to enriching the lives of those living with dementia, with a goal of easing the unnecessary suffering of loneliness which is often experienced by those in memory care facilities. She was honored with the 2015 Treasure Coast Hospice Thanks for Giving award and the 2017 Sage award for Community Service from the Kane Center, home of the Council on Aging of Martin County.

Gytha has also served on the boards of several Treasure Coast nonprofits, including as a board member for The Community Foundation Martin – St. Lucie and her current 3-year term with the Cleveland Clinic Martin Health Foundation’s Board.

“As a board member, I’ve participated in many hospital rounds with the leadership team, getting to meet with patients and staff,” says Gytha. “I’ve really enjoyed the opportunity to express my gratitude for all the caregivers and to see firsthand how much Cleveland Clinic has brought to our community.”

Sharing her gratitude

It is with gratitude that Gytha recently honored 28 individual caregivers across Cleveland Clinic Martin Health for the care her beloved brother, Clifford Bryan Mandody, received last year, following his admission for blood clots in several major organs.

“I was with my brother at Martin North Hospital every day for five weeks,” says Gytha. “The dedication and kindness of the physicians, the nurses, the techs, the security guards and the cafeteria employees all contributed to making this most difficult time in my life somehow bearable.”

At one point early in his hospitalization, Clifford suffered cardiac arrest, but the code blue team was able to resuscitate him after more than 45 minutes of CPR. He had a “miraculous recovery” and overcame multiple challenges, says Gytha, and was eventually strong enough to be discharged to a rehabilitation center.

Unfortunately, a week later Clifford was diagnosed with sepsis, a life-threatening response to an infection. He returned to Martin North Hospital, where he, sadly, succumbed to respiratory failure a few days later. “The extra four weeks with my beloved brother, which I would not have had except for the heroic efforts of the ICU staff, is an immeasurable gift that I will always treasure,” shares Gytha.

In gratitude for the care Clifford received, donations in his memory were directed to Code Lavender™, a personalized, rapid response holistic care service provided by the Healing Services and Spiritual Care teams. It provides emotional and spiritual support as well as grief counseling when a healthcare team, employee team, patient or family would benefit from additional well-being support. Gytha and Dennis also expressed their special thanks for the many caregivers, who made a lasting impression, by contributing to Cleveland Clinic Martin Health through the Guardian Angel Grateful Patient Program.

“Gifts provided through the Guardian Angel program help us purchase leading-edge medical technology and equipment, start new lifesaving programs, build and renovate facilities and educate our caregivers,” says Rishi P. Singh, MD, Vice President and Chief Medical Officer for Cleveland Clinic Martin North and South Hospitals. “We are thankful for Gytha’s tireless support and her family’s financial contributions to Martin Health.”

Gytha adds, “I was proud to attend every single ceremony when a caregiver received an angel pin in recognition of their service, and I want people to know how fortunate we are to have Cleveland Clinic in town.”

A patient’s perspective

Unfortunately, her brother’s medical crisis and passing was not the only challenge Gytha faced in 2023. An unusual finding on a routine vision test led to an MRI that identified a large aneurysm in her intracranial carotid artery. Within a week of this diagnosis, Gytha underwent surgery at Cleveland Clinic Tradition Hospital.

Neurosurgeon Jeffrey Miller, MD, Director of Endovascular Neurosurgery at Cleveland Clinic Martin Health, performed a minimally invasive procedure to divert blood flow away from the weakened and bulging blood vessel wall in her brain.

“Everyone was so kind at Tradition Hospital, and Dennis and I were really pleased with the exemplary care I received,” notes Gytha. That’s why the couple’s most recent annual gift through the Barstow-Reed Society will go to support the Neurosciences Institute at Cleveland Clinic Martin Health.

Their past contributions have supported Martin Health’s Lung Cancer Center of Excellence and the Cleveland Clinic Florida Research and Innovation Center located across from Tradition Hospital in Port St. Lucie.

“Cleveland Clinic has brought world-class physicians and innovative technology to our community,” says Gytha. “We are so blessed. I encourage other leaders to use their social capital to spread the word about our good fortune in having this stellar organization in our backyard and urge them to  support Cleveland Clinic Martin Health with their time, talent and treasure.”

Support for Indian River Hospital Hits All the Right Notes

Support for Indian River Hospital Hits All the Right Notes

Cleveland Clinic Indian River Hospital supporters and friends gathered for a noble cause at the 33rd annual May Pops spring concert, featuring the magnificent Brevard Symphony Orchestra. With more than 600guests in attendance, the event at the Windsor polo field in Vero Beach proved to be a resounding success, raising nearly $500,000 in support of the Indian River Hospital Emergency Department (ED) renovation. In addition, Presenting Sponsors Chase and Wendy Carey were honored for their generous donation of $5,000,000 toward the ED renovation in 2023.

The event kicked off with remarks by Roxanne Hall, Executive Director of the Cleveland Clinic Indian River Foundation, who thanked guests for their unwavering commitment to elevating medical care for residents of Indian River County. She provided a brief update on the Indian River Hospital ED, sharing progress of the fundraising and exciting plans for the renovation.

The new space will feature a Flex Care Unit designed to support patients with serious but non-life-threatening conditions, while the ED will continue to serve patients with life-threatening conditions. All patients will enter through a renovated lobby and, after triage, will be directed to the ED or the Flex Care Unit, depending on the acuity of their condition. The renovation aims not just to alleviate the strain on the ED, but to ensure effective healthcare delivery, creating a resilient system that can seamlessly adapt to the community’s rapid growth.

Judy LaFage, the foundation’s Board Chair, introduced the conductor, symphony and soloists. Under the baton of Music Director Christopher Confessore, the Brevard Symphony delighted guests with several beloved Broadway musical hits performed by renowned vocalists Scarlett Strallen and Hugh Panaro.

May Pops was conceived by longtime supporters Dick and Helen Post, who envisioned a grand end-of-season celebration to rally support for the hospital, enveloped in the joy of good friends, sublime music, and delectable cuisine, all in the name of a noble cause. Since Dick's passing in 2013, guests have been invited each year to honor his memory and distinctive style by wearing bow ties to the event.

Thanks to the extraordinary success of May Pops, fundraising efforts for the ED renovation have now reached $12 million of the $15 million goal necessary to complete the construction. To contribute to the project or learn more how your generosity and support can truly make a transformative impact, please call 772-226-4960 or visit the Cleveland Clinic Indian River Foundation website.