Darrell Bell looks out the front door of his Swissvale home for a portrait, Thursday, Jan. 9, 2025. Bell mainly stays home, but pays out-of-pocket to go to an adult day memory care service once a week, because the care is not covered by his Medicare and UnitedHealthcare plan. (Photo by Stephanie Strasburg/PublicSource)
Allegheny County is second only to Palm Beach in its share of senior citizens among U.S. metros. Amid rising dementia rates, Black caregivers may not be connecting with resources as they seek to care for loved ones.
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Velouise Bell, 69, was visiting her son in New York when she received a call that her house was on fire. Her husband, Darrell, was home alone at the time in the summer of 2023. To this day, Bell does not know exactly how the fire was started, but she remembers it as a clear sign that her husband of 48 years was starting to experience memory loss.
Around 20% of Allegheny County’s population is 65 and older, according to recent studies, placing among the highest concentrations of seniors of any large U.S. county. Of the adults 65 and over, 12% have an Alzheimer’s diagnosis, and even more seniors battle other forms of dementia.
The county’s aging population brings a growing need for dementia care, and that support often comes from within the home. Caring for a loved one with Alzheimer’s or dementia places heavy demands on the caregiver, which can significantly impact their mental health.
Bell, now her husband’s primary caregiver, knew she needed additional support after a particularly difficult day when their dog was sick and also needed care, so she sought out a caregiver support group. While she was willing to seek help on her own, Bell pointed out that some families struggle taking this step, particularly within the Black community.
“A lot of families don’t want to admit, they are in denial that there is a problem,” said Bell.
Bell’s husband, who is being evaluated for Alzheimer’s, is not the first person she has known with signs of cognitive decline — her father-in-law also had Alzheimer’s. This prior experience prepared Bell to seek out help when it came to her husband. But, she added, many resources are not as “available to African-American families, and maybe it’s because we don’t know about it.”
Research has shown that women, individuals from lower socioeconomic backgrounds and racial and ethnic minorities tend to carry greater burdens as caregivers, in part because of limited financial resources and systemic medical discrimination.
According to the Alzheimer’s Association, older Black Americans are twice as likely as older white Americans to have Alzheimer’s or other forms of dementia. While the reasons are not yet clear, barriers to health care and higher rates of cardiovascular disease among Black Americans are considered likely contributors.
“The lack of actually talking about [the diagnosis] outside of their family unit because they [Black Americans] don’t want to burden anyone else … is something we see nationwide,” said Sara Murphy, vice president of programs and services for the Alzheimer’s Association Greater Pennsylvania Chapter. Within the Black community, there is a need to “address it, talk about it and destigmatize it,” Murphy continued.
‘I put myself aside’
In 2020, Jacqueline Ruple retired from a career as a nurse practitioner to take care of her father who had Alzheimer’s. Because of her medical expertise, Ruple was able to get her father the care he needed, such as a chair lift for his home, and even enrolled him in a research program through UPMC.
“Because of that knowledge, a lot of the stumbling blocks that most people run into, I was blessed not to run into,” Ruple said. “That’s why I try to take that knowledge out into the community.” Ruple serves on the Allegheny County Building Our Largest Dementia Infrastructure Coalition and is an advocate for the Alzheimer’s Association.
But her education and experience as a nurse did not shield her from the additional stress and burden that comes with caring for a loved one experiencing memory loss.
“I was so focused on my mom and my father that I did not [seek additional support],” Ruple said. “I put myself aside.”
According to the 2024 annual report from the Alzheimer’s Association, finding respite care is the top stressor for Black caregivers (39%), yet only about half of the caregivers surveyed reported talking to a health care professional about their struggles or asking for additional help.
“A lot of the organizations, the agencies that are available to assist the community need to have one central communication center so that information can be branched off instead of doing little pockets of care,” Ruple said. “I think that’s what causes people not to [reach out], especially in the African American community.”
For caregivers who are unfamiliar with dementia symptoms and stages, it can be difficult to know where to find help and treatment for their loved ones. That’s why educating the public about dementia is crucial, said Doreen Putnam, a certified dementia practitioner who has helped educate and train more than 11,700 people in dementia caregiving.
Resources for dementia caregivers
- Allegheny County’s Area Agency on Aging SeniorLine: 412-350-5460 or 1-800-344-4319 (toll-free)
- The Alzheimer’s Association Community Resource Finder
- A list of caregiver support groups
- The Alzheimer’s Association 24/7 helpline: 1-800-272-3900
- Flourishing Communities hosts educational dementia seminars
- Dementia360, a Presbyterian SeniorCare Network program
Not yet old, not quite poor
Nearly half of older adults in Allegheny County report having health care coverage through Medicare, according to a 2022 study. The federal insurance program, though, does not cover the cost of living in a memory care facility or long-term personal care, which can include assistance with the activities of daily living, like eating and bathing.
Bell’s husband attends Anathan, an adult day memory care service, once a week, but they have to pay out-of-pocket because this type of care is not covered by their Medicare and UnitedHealthcare plan.
Anathan’s program is ideal for Bell, who sometimes needs a break from caregiving but doesn’t like to leave her husband overnight. Yet a day rate increase from $75 to $90 at Anathan caused concern for Bell, who does not receive outside financial assistance. “We’re not wealthy people,” Bell said.
For people who are too young to qualify for Medicare — which is restricted to patients 65 and older — and above the income limit for Medicaid, finding outside care for their loved one can be a challenge.
“The majority of people are caught in the middle,” said Ruple. “They don’t make enough [or] they make too much. Too much can be just a couple hundred dollars and the system is so strict that they really penalize them for making this couple of dollars too much.”
Allegheny County’s 2025 budget, approved in early December, restores almost all of the requested funding for Allegheny County Department of Human Services [ACDHS] — a crucial asset for caregivers who are in need of additional support. The budget was approved by the minimum 10 out of 15 council members required for passage, raising property taxes and securing funding for services that would have been jeopardized without the revenue hike.
County funding will target essential services for older adults and caregivers and will help the ACDHS Area Agency on Aging [AAA] to provide programs such as in-home care and meal delivery, said Shannah Gilliam, the agency’s director. Qualifying caregivers can receive reimbursement for caregiving expenses — such as supplies, services and assistive devices — through the ACDHS-AAA Caregiver Support Program.
“Although the majority of funding for the Area Agency on Aging comes through state funds through the Pennsylvania Department of Aging, there’s a significant shortfall, a gap, between what we receive … and the need that we are seeing in our county,” said Gilliam.
In October, Gov. Josh Shapiro established an Alzheimer’s, Dementia and Related Disorders [ADRD] Division at the state level to support both caregivers and older adults living with dementia. The accompanying bill also creates an ADRD Advisory Committee to allow statewide stakeholders to advocate for policy and harness additional resources to better address the needs of those living with dementia and the people that support them.
“We know that these groups and their caregivers often face social, cultural and financial barriers to accessing the services and supports they need,” said Karen Gray, Pennsylvania Department of Aging spokesperson, in a statement to PublicSource. “Pennsylvanians with ADRD have increased and complex care needs, and their caregivers — now numbering 465,000 in Pennsylvania – need support.”
The governor’s new legislation has garnered support from caregivers, advocates and researchers.
“Right now we expect caregivers to kind of just tough it out on their own,” said Steven Albert, professor and chair of community health and social justice at the University of Pittsburgh. “If you’re not blessed with good family support or resources, it’s really hard. This is a good opportunity for the government to use its infrastructure and leverage to help the most vulnerable caregivers.”
Gilliam said she is looking forward to seeing how this new legislation is “operationalized across the state and in the counties.”
“It’s wonderful to have a champion at the highest level of the state who is actually putting attention on these areas and these issues through the Aging Our Way, PA plan,” Gilliam added.
Creating communities of support
Enhanced support for caregivers can come from creating a dementia-friendly community where caregivers can share their experiences, find additional resources and receive emotional support. Nationwide, nearly half of adults age 65 and older attend a religious service at least once a week, making faith-based organizations a frequent first port of call for caregivers seeking help.
Yet many faith communities are not equipped to support their members with dementia and their caregivers.
“I think many faith communities wrestle with accommodating people who are cognitively impaired,” said Rev. John Welch, CEO and chair of Flourishing Communities and senior pastor of the Sixth Mount Zion Missionary Baptist Church in Larimer.
Organizations, including the Alter program, work with faith communities to create a supportive and accommodating environment at no cost for Black families who are affected by dementia, said Welch.
Black caregivers often fail to seek help because they fail to first identify themselves as caregivers, according to Stefanie Small, director of clinical services for Jewish Family and Community Services and the leader of the caregiver support group that Bell attends.
“There’s a number of reasons why we don’t reach out,” Welch said. “One, because of distrust. Another reason is we’re kind of called to keep things in the family.”
Churches can act as a “safe place” for caregivers to ask for help and can even foster caregiver support groups, Ruple said.
By encouraging caregivers from diverse backgrounds to share their experiences, a greater sense of trust can take root within the community, Murphy said. “It’s not just churches, it’s wherever people are going for support, making sure that they are armed with the information and support.”
Despite reaching out to her minister for emotional support, Bell still feels her outreach comes with limits. The challenges involved in finding the right doctors for her husband and support for herself has left her feeling “extremely frustrated” while her husband’s condition continues to worsen.
“What I would love to see is … a step by step process,” Bell said. “Maybe I went about it the wrong way, but I just didn’t know what to do at the time. Nothing really pans out the way I think it should.”
Amber Frantz is a former editorial intern at PublicSource and freelance writer. She can be reached at amberfrantz@pitt.edu.
This story was fact-checked by Angela Goodwin.
This article first appeared on PublicSource and is republished here under a Creative Commons license.
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