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  • Caregiver Thrive, Learn & Connect Support Program Enriches the Lives of Family Caregivers in North Carolina

    Caregiver Thrive, Learn & Connect Support Program Enriches the Lives of Family Caregivers in North Carolina

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    CHARLOTTE, N.C., September 12, 2023 (Newswire.com)
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    After receiving widespread attention for demonstrating positive outcomes in Charlotte and other parts of North Carolina, the Caregiver Thrive, Learn, Connect (TLC) Program is set to make significant strides in supporting caregivers across the country. The program’s remarkable success comes at a crucial time. Fifty-three million adults in the U.S. (21.3 percent) are caregivers, but access to affordable and coordinated services remains scarce.

    Structured for Success

    The research phase of the program, spearheaded by UNC Charlotte and supported by generous funding from Southminster, began in the Charlotte area in Spring 2021 and released findings in Summer 2023. It offered free online workshops and support to adults providing care to people with memory loss, dementia, or chronic illness. Caregivers completed six weekly sessions led by trained facilitators through video conferencing. The workshops were designed to teach coping skills caregivers need to deal with stress, depression and burden, as well as strategies to improve quality of life.

    Background

    It took years of dedicated bi-coastal collaboration to develop and test the efficacy of the program with a goal of making it free and accessible for anyone caring for a loved one with a chronic condition or significant memory impairment. 

    —Dr. Dolores Gallagher-Thompson, Stanford University, developed the original program called Coping with Caregiving about 20 years ago. The program was successfully offered to individual and small groups of caregivers in person. 

    –Principal Investigator Dr. Julian Montoro-Rodriguez at UNC Charlotte adapted the Coping with Caregiving program to be delivered fully online over Zoom meetings to become the Caregiver TLC educational free workshop in response to the needs of caregivers during the COVID-19 pandemic.  

    —Dr. Jennifer Ramsey, Caregiver TLC Project Coordinator at UNC Charlotte, managed recruitment of caregivers and facilitators, implementation of the program and assessments, among other tasks. 

    —Dr. Ann Choryan Bilbrey, CEO of the Optimal Aging Center, trained professionals to deliver the Caregiver TLC program, provided weekly facilitator consultation meetings, and tracked the fidelity of the program in the research protocol.

    —Bruno Kajiyama, CEO of Photozig, Inc. applied the technology to deliver programs. The program website “https://caregivertlc.org” platform was developed by Photozig.

    —Southminster, a non-profit Life Plan community dedicated to supporting research and healthy aging initiative, invested in the Caregiver TLC Program to enable the program to be offered free to caregivers in Charlotte and across North Carolina. As part of the team that helped recruit facilitators and educate the community about the program, Southminster promoted the research and helped make the program sustainable long term.  

    Clinical Implications

    Data collected from the two-year research program shows that caregivers experienced a significant reduction in depression and stress and improved how they saw their role as caregivers. “There was a positive effect no matter whether those being cared for suffered from memory loss, dementia, or chronic illness,” Dr. Montoro-Rodriguez said. “In addition, even though some people believe it makes sense to develop different programs for ethnic groups and minorities, this research program indicates that the same approach serves various ethnicities equally.”

    Another crucial aspect of the research is that it demonstrates that a psychoeducational program such as Caregiver TLC can be effectively delivered via technology. “This is crucial because many caregivers do not have time to travel and participate in workshops in person. Those in rural areas where there are no services at all can really benefit from virtual sessions,” said Dr. Montoro-Rodriguez. “Although some caregivers may be relatively inexperienced with telehealth-type service delivery at the outset, they are able to learn enough to participate in this type of program and complete on-line questionnaires.

    “In addition, we also found a way to actually make the program sustainable by working with community partners to embed it into their range of services (Jewish Family Services). We also expect that other members of the community advisory board and organizations will use the free program by training their own social workers or case manager professionals to deliver it,” he said. 

    The Importance of Community Partners

    Jewish Family Services was one of the two, diverse, non-profit partners that participated in the research phase of the Caregiver TLC program. Sheryl Gerrard, the organization’s senior engagement manager, had done her certification in gerontology at UNC Charlotte when Dr. Montoro Rodriguez was the director of that program. He contacted her to be trained as a facilitator, and she was excited about the opportunity. “We had been offering a family caregiver support group, but this new psychoeducational program targeting caregivers was right in my wheelhouse,” Gerrard said. “It was quite a learning experience with a pretty intense months-long process to make sure there was integrity and fidelity in the program, and that we were doing things correctly and understood objectives. I was trained as a Master Trainer, so now I can train people in our agency to facilitate groups also.”

    The hard work that contributed to the success of the research paid off quickly. Gerrard said she loved seeing the positive benefits in the results, and Jewish Family Services has already offered the program to new group, with plans to offer it to another group in the winter. “I think the biggest value is that it has a ripple effect. We have our own base of caregivers, and we work with many, many family members, so we can reach a whole different audience that might not have been connected through the university or Southminster. The program’s themes such as stress coping and anger management are so universal across the caregiving experience. They can also be extended to support parents who have neurodiverse children, for example. The possibilities are inspiring.”  

    The Frankie Mae Foundation in Charlotte was also a vital part of proving the efficacy of the Caregiver TLC program. Executive Director Venitra White-Dean served as a facilitator for six to seven caregivers who were already participating in Frankie Mae’s own exceptional programs. All Caregiver TLC facilitators followed the same workbook during the weekly virtual workshops to ensure all training was uniform and consistent. Keeping each group small ensured caregivers could really get to know each other, learn from each other and share advice about what might work with someone you’re caring for. 

    White-Dean said she learned as much as the caregivers in the training. “My mom passed away in 2020, and as I went through facilitating all the activities and practices to help caregivers cope, I wished this program had been available to help me in my own caregiving journey. I still use all the insights I learned in my daily life.” 

    White-Dean says the Caregiver TLC program is invaluable because it’s another piece of the puzzle in a community of ongoing resources. Through its monthly meet-ups, support groups and other activities, Frankie Mae is all about giving caregivers a safe space to share their challenges and not be judged. “We have plans to integrate Caregiver TLC into our regular programs. But even if caregivers are not involved in the services of the Frankie Mae Foundation, or don’t go through Caregiver TLC, it’s crucial they all reach out to someone and get help to cope.” 

    Moving Forward

    The Caregiver TLC program is now poised to benefit families far beyond its initial reach. Recognizing the diversity of caregivers across the nation, the program is currently being translated and culturally adapted for Latinos and Spanish speakers by UNC Charlotte in collaboration with other colleagues in the U.S. and Spain. “Since Latino caregivers have higher rates of dementia, we are moving forward with a goal of translating the program to serve Latino caregivers in the U.S. and other countries starting in the fall,” Dr. Montoro-Rodriguez said.

    “We are pleased with the outcomes of the online workshops and the opportunities for sustaining and growing the program. Our investment of charitable resources proved to be an effective way to create solutions to support caregivers, with a goal of improving not only their own well-being, but the lives of those they are caring for,” said Southminster President/CEO Ben Gilchrist. 

    “This is a wonderful example of how innovative partnerships can accelerate work in developing evidenced-based programs of excellence that contribute to research on aging while improving outcomes for those doing the important work of caregiving,” said Tracy McGinnis, Vice President of Philanthropy & Strategic Initiatives at Southminster. 

    As an evidenced-based program, Caregiver TLC now has the potential to be offered anywhere in the country, creating an even larger more supportive network of professionals and caregivers with like-minded goals of enhancing the lives of the millions who provide care to a loved one every day.

    For more information, visit Caregivertlc.org 

    About Southminster

    A leader in the field of aging, Southminster is a non-profit, charitable Life Plan Community, providing innovative living solutions to aging across a full continuum of care. Dedicated to overall well-being, Southminster embraces living life with purpose by valuing independence and privacy, inspiring creative passions, encouraging lifelong learning, and motivating each individual’s plan for wellness to its highest potential. For more information on Southminster, please visit www.southminster.org.

    Source: Caregiver TLC

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  • Alone Together: Caregivers and Loved Ones Struggle With Alzheimer’s

    Alone Together: Caregivers and Loved Ones Struggle With Alzheimer’s

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    For a while, Barbara Hebner would grab whatever things she could find, bundle them into her bathrobe, and then tie everything to her walker and head for the door. She wanted to go home.

    Her first breakout attempt happened in 2018. Hebner somehow slipped past her vigilant daughter, Kimberly Hayes Bock, and got as far as the back gate, when a neighbor raised the alarm. The near-escape frightened Hayes Bock – and, as the fear wore off, made her feel guilty. She installed double-sided locks on the doors and a padlock on the gate.

    The runaway phase lasted a few months. Once, during an episode, her mother slammed a walker into Hayes Bock, hitting her hard.

    Now, 5 years later, Hebner still tries doors, but less often, and with less determination. Around 6 months ago, her thinking skills worsened. She can no longer put sentences together that make sense, says Hayes Bock, of Joplin, MO.

    Day after day, year after year, the struggles caregivers face, both big and small, take their toll. Caregiving for a parent is a kind of role reversal: a dark mirror of the nurture and support that once went the other direction. 

    Hayes Bock’s situation is not a rare one; she’s one of 16 million unpaid caregivers in the U.S. But here, there is no strength in numbers. The job itself is so solitary that many struggle alone.

    With a young child, even on difficult days, it’s easy to imagine the happy milestones: the first steps, or the first day of school. Caregivers don’t see a bright future for their loved one – only decline. Alzheimer’s disease and other types of dementia chip away at your dignity and independence, while caregivers figure out how to manage jobs, family obligations, and ever-present guilt and sleeplessness.

    There are moments of grace, like a smile of recognition, or a squeeze of the hand. There are also flashes of humor. Hayes Bock recalls the time she was looking for her mom’s 40-ounce purple bottle, and found it on the nightstand wearing a lampshade. The lamp was in the trash. “We struggle because they have changed,” she says. “The moments of grace come when we realize that a lot of the suffering is ours, as caregivers.”

    Hebner moved in with Hayes Bock in 2016, not long after she was diagnosed with mild cognitive impairment. They tried memantine and Aricept, drugs for moderate to severe Alzheimer’s that can help with confusion and memory loss. Neither drug helped, and the side effects were intolerable.

    Today, at age 80, Hebner needs 24/7 care. She no longer recognizes her daughter, who calls her “Barbara” instead of “Mom” sometimes, because Hebner no longer responds to “Mom” or “Mother.” She needs help bathing, but she can still dress herself, even if she ends up with mismatched clothes and her shoes on the wrong feet. Her habit of ripping the crotch out of her depends and then flushing it once earned a $450 charge from the plumber.

    Hayes Bock recently posted in a caregiver support group on Facebook that she didn’t know what was worse: finding feces on the floor, or being properly prepared to clean it up, because such messes happen so often. Hayes Bock has learned to laugh it off. “It’s the ugly, hard situations that bring out the patience you never knew you had. Those moments when keeping their dignity becomes top priority,” she says. “As caregivers, we are looked at like rock stars. If I can just get us through this with that dignity intact, whether she knows it or not, it will be a win. No rock star here, just a daughter trying to do right by my mom.”

    Over the years, Hayes Bock has relied on paid caregivers to fill in when she couldn’t be around. Fortunately, Hebner’s escape attempts never included wandering at night, so when the house powered down in the evening, Hayes Bock would make sure her mom was in bed, and then lock up for the night. Last January, she was able to rearrange her work schedule to accommodate caregiving. Today she works the night shift, Thursday through Sunday, in her job as a machine operator at a nearby food plant. While she’s working at the plant, her husband takes over caregiving. Hayes Bock gets home from work around 7 a.m. and sleeps until around 11. She’ll check on her mom and feed her if she’s awake. “In these later stages, they sleep a lot. Then I go back to sleep until 3:30 or so and do it all over,” she says.

    Although Hebner is far from catatonic, she sits in a chair all day having conversations with people who aren’t there. Now, she only takes her walker on laps around the house when she’s hungry, sometimes putting cookies in her pocket. Hayes Bock worries about her mom’s nutrition and adds Ensure to her cereal to boost the vitamin count. She recently asked the doctor what comes next, and they talked about difficulty swallowing. She dreads the day her mom stops eating completely.

    “If I get two meals in her, and pants on her, it’s a good day,” Hayes Bock says. “We decided it was laugh or scream. You have to laugh or you’ll lose your mind.”

    Caregivers all over the world could tell the same stories. “With dementia, grief and loss begins before death and doesn’t stop afterwards,” says Karen Moss, PhD, an assistant professor at Ohio State University’s colleges of Nursing and Medicine, and a nurse-scientist who studies dementia in family caregivers. Moss’s work focuses on the anxiety and stress of caregiving, pain, and the end of life of older adults who have dementia. Moss specifically focuses on Black adults with dementia and their family caregivers. 

    Dementia and Alzheimer’s are extremely difficult conditions for the person going through the disease, especially early on as they struggle to figure out what’s wrong, says Moss. And family caregivers struggle too.

    For starters, caregivers have to cope with changes brought on by normal physical aging – like decreased mobility and worsening vision – as well as the anguish of watching the person they love slowly disappear. As they fade, caregivers are left with heavy decisions to make – alone. If, say, a loved one falls, caregivers need to know whether to call the doctor or head to the ER.

    In these scenarios, financial concerns loom large. Was that fall bad enough to head to the ER, which is so much more expensive than urgent care? What if it was the third one in a month?

    As the disease gets worse and people with dementia need more and more help with everyday tasks like balancing the checkbook and paying bills, caregivers need to shift how they manage jobs and family obligations, all the while struggling to create a life that’s calm and happy, says Jason Karlawish, MD, a geriatrician and professor of medicine at the University of Pennsylvania Perelman School of Medicine in Philadelphia. 

    There is no cure for Alzheimer’s disease. Three drug trials are awaiting the FDA’s review, but of the more than 100 that have come before, none have had much success. But advocates would settle for less than a cure.

    Even the ability to slow down the disease’s symptoms would be life-changing for many. “I think that’s a vision we have to have in this disease,” Karlawish says. “This idea that we are going to drug our way out of Alzheimer’s and turn it into polio, where all you need to do is get the vaccine and you’re done, is not a sensible position for science policy or for public policy.” 

    Even if a drug manages to affect the disease’s course, the treatment likely won’t be simple – and may need to begin years before symptoms even appear, says Eric McDade, DO, a neurologist at Washington University School of Medicine in St. Louis and principal investigator on a global clinical trial in a group of patients with dominantly inherited Alzheimer’s disease. “I hesitate to get too excited just knowing how difficult these trials are and how surprised we’ve been in the past,” he says

    Moss finds that both current and former caregivers are eager volunteers for clinical trials – especially her projects covering caregiver stress. They also volunteer what information they can on how the disease is affecting their loved ones. “With Alzheimer’s disease and other related dementias or any disease for which there is no cure, people want to feel that there’s a saving grace; many of us want to know there’s something that can help turn around the disease for their loved one.” 

    And they come prepared with questions of their own.

    “Caregivers are super savvy individuals,” she says. “When we approach them for research, they want to know what we are going to do with this information. They ask, ‘How am I going to get the results?’ They want to know, and they deserve to know.”

    Susan Hersey Guilmain learned about her husband’s dementia when she signed them both up for a clinical trial at nearby Butler Hospital. The trial was supposed to test whether a Mediterranean diet could stave off cognitive decline. Neither qualified for the trial. Hersey Guilmain’s diet was already too close to what was being tested, and medical tests showed that her husband Roger already had significant cognitive impairment.

    At first, he didn’t believe the tests. But the team at the hospital reassured him that they could help. “They put a positive vibe on it, so he was OK with going to his doctor and getting further testing and treatment options,” says Hersey Guilmain.

    The Butler team eliminated over-the-counter sleep medications, including Tylenol PM and the three Benadryl tablets he was taking every night. They changed his diet and upped his exercise. Roger started to show improvement. He’s also taking Aricept and the herb Bacopa monnieri. A few months ago, he joined an early clinical trial testing whether Emtriva, an HIV drug that reduces inflammation, is safe for people with mild to moderate Alzheimer’s.

    He was diagnosed a little over a year ago, and he’s still at the stage that Hersey Guilmain, a retired occupational therapist in Smithfield, RI, calls “the funny stuff.” He gets confused; he thought their Dunkin’ Donuts moved, and that someone had changed the buttons around on the microwave. “He actually said, ‘Who did this?’” says Hersey Guilmain.

    She adds moments of calm to their days by making certain they take walks in the sunshine, around the neighborhood or a nearby lake. They also enjoy a cocktail hour every day at 5, sipping either wine or cider. The TV is off and they spend half an hour or so connecting with one another. 

    “Right now, it’s not as intense as it can or will be,” she says. “It’s stuff I can laugh at.” Sometimes, Hersey Guilmain gets frustrated when her husband is uncooperative about brushing his teeth, or when he tells a story that didn’t happen. She reminds herself that this is a disease, and she chooses to make jokes, rather than getting into an argument.

    “It’s not an argument I can win,” she says.

    After caring for an aunt and her mother, both of whom died with late-stage dementia, Hersey Guilmain knows what’s ahead. Even with the spectacular progress Karlawish says the Alzheimer’s field has made in less than 20 years, there’s still very little help for caregivers. 

    Hersey Guilmain says she fights every day to stay positive. “I am not going to think ahead to ‘what if,’ because I can’t,” she says. “I am just doing today, and today is good.”

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  • NHCOA to Host Virtual ‘Caring for the Caregiver During the Pandemic’ Training

    NHCOA to Host Virtual ‘Caring for the Caregiver During the Pandemic’ Training

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    Press Release
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    Jul 12, 2022


    WASHINGTON, July 12, 2022 (Newswire.com)
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    The National Hispanic Council on Aging (NHCOA) remains committed to its mission of empowering Hispanic older adults, their families, and caregivers. One of its key focal points for 2022 and beyond is advocating for the caregivers who do so much for aging and ailing loved ones. Providing quality care for their care recipient is only one of the many invaluable duties they perform tirelessly every day; within this new inhabited reality due to the COVID-19 pandemic, it is vital that caregivers recognize the importance of self-care, mental health, and taking advantage of the resources available to them.

    To help support and educate caregivers, on Saturday, July 16, 2022, NHCOA will be holding a one-day virtual training titled “Caregiving Training: Caring for the Caregiver during the Pandemic.” This training (conducted in Spanish) will focus on providing caregivers with the tools and resources they need to overcome caregiving challenges, including those imposed on them by the COVID-19 pandemic. The training will also emphasize the importance of practicing self-care habits, recognizing one’s role as a caregiver, and understanding what that role entails. As part of the training, there will be a discussion surrounding approaches to maintaining the caregiver’s mental, emotional, and physical health.

    The “Caring for the Caregiver during the Pandemic” training is sponsored by our friends at AARP. “Caregivers are the backbones of America’s care system, providing the bulk of care for older people in the U.S. as they strive to live independently. Caregiving can be an all-consuming experience that leaves the caregiver exhausted and lonely – that’s why AARP is proud to support this initiative led by NHCOA to provide mental health resources for caregivers,” said Yvette Peña, Vice President of Audience Strategy, Office of Diversity Equity & Inclusion at AARP.

    Spaces for this training will be limited, so be sure to contact Christine S. Perez at c.perez@nhcoa.org or research@nhcoa.org to ensure a spot.

    NHCOA’s Caregiving Training: Caring for the Caregiver during the Pandemic

    WHEN: July 16, 1 p.m. (EDT)

    WHERE: via Zoom RSVP: contact Christine S. Perez at c.perez@nhcoa.org or research@nhcoa.org. Or contact NHCOA at 202-658-8664 (via WhatsApp) and 202-347-9733.

    About the National Hispanic Council on Aging (NHCOA): NHCOA is the leading national organization working to improve the lives of Hispanic older adults, their families, and their caregivers. Headquartered in Washington, D.C., NHCOA has been a strong voice dedicated to promoting, educating, and advocating for research, policy, and practice in the areas of economic security, health, and housing for Hispanic older adults, families, and caregivers for more than 50 years. For more information about NHCOA, call 202-347-9733 or visit www.NHCOA.org.

    About AARP: AARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering people 50 and older to choose how they live as they age. With a nationwide presence and nearly 38 million members, AARP strengthens communities and advocates for what matters most to families: health security, financial stability and personal fulfillment. AARP also produces the nation’s largest circulation publications: AARP The Magazine and AARP Bulletin. To learn more, visit www.aarp.org, www.aarp.org/espanol or follow @AARP, @AARPenEspanol and @AARPadvocates, @AliadosAdelante on social media.

    Source: NHCOA

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  • Trinity’s Loving Hands Home Care Moves to New Location in Kennesaw to Serve Seniors and Their Families Who Need Home Care

    Trinity’s Loving Hands Home Care Moves to New Location in Kennesaw to Serve Seniors and Their Families Who Need Home Care

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    Tarshal Edwards and her staff of healthcare professionals are ready to bring families personalized care at their homes. Her home care agency just opened an office in Kennesaw to serve Seniors in the area who need specialized care.

    Press Release
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    Jun 7, 2022


    KENNESAW, Ga., June 7, 2022 (Newswire.com)
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    Trinity’s Loving Hands Home Care just opened a new office location at 1275 Shiloh Road NW, Suite 3030 Office D, Kennesaw, Georgia 30144 just off of Shiloh Road and I75, the Larry McDonald Memorial Hwy.

    Trinity’s Loving Hands Home Care in the Atlanta area has healthcare professionals ready to serve Seniors.

    In Atlanta alone, there are over 550,000 people aged 65 and older. By 2030, the number is expected to jump to nearly a million. With a growing Senior population, more adults need access to transportation to and from medical appointments, events, and their homes. For caregivers, the stress of juggling their day-to-day life and caregiving can become overwhelming. Even after discharge from a hospital or at-home therapy, home healthcare providers don’t stick around forever, and further help is needed. However, there are more options available to keep seniors relatively independent and at home for a longer time.  

    Go to https://trinityshomecare.com to learn more. Call 888-635-6855 for a consultation.

    Trinity’s Loving Hands Home Care Certified Nurse Assistants as well as Home Health Aides are both available for a variety of non-medical services. Some services include:

    • Meal preparation and cooking.
    • Transition from bed to chair. 
    • Medication reminders and management. 
    • Housekeeping.
    • Exercise assistance. 
    • Dressing and grooming.
    • Bathing assistance. 
    • Implementing care plans.
    • Chronic illness and disease management.

    Trinity’s Loving Hands Home Care is Offering Free In-Home Assessment if Clients Start by August 1. Call 1-888-635-6855.

    What stands out about Trinity’s Loving Hands Home Care? Their licensed caregivers can speak directly to physicians to prevent excessive doctor’s visits. Clients can have access to basic medical care at home and can implement care plans provided by physicians. Trinity’s caregivers can be permanent in the home and may be approved by insurance companies to provide continued assistance past hospitalization or other care. 

    Founder Tarshal Edwards is a Registered Nurse and has over 20 years of senior caregiving experience and is a proud Army Veteran. All of Trinity’s Loving Hands Home Care workers are fully certified and passionate about giving the best care to their clients. With about 30% of Americans providing caregiving services to their relatives in the last year and many experiencing burnout, Home Care can give an opportunity for relatives to recharge while still providing the utmost care to their family. Simple errands take up a lot of time and energy when managing two or more households. 

    Enjoying time with family is important. Trinity’s Loving Hands Home Care wants to be the extra set of hands to assist in the care needs of one’s family. 

    Contact the company today for price quotes and a full description of services. 888-635-6855.

    Source: Trinity’s Loving Hands Home Care

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