‘A community problem’: As families struggle, groups work to ease difficulties from Alzheimer’s

Ernie was diagnosed in 2019 with the most common cause of dementia. It affects nearly 7 million Americans 65 and older.

Neumeister has witnessed Alzheimer’s disease gradually steal the memory and other cognitive abilities of her husband of 57 years. Caring for him against a formidable opponent comes with a mountain of challenges she works to surmount each day.

“It’s been a journey. … Some days it seems like it’s overwhelming. There’s times when I just have to sit down and say, ‘You know, we’ve got to take this step by step,’” she said.

“You know, it could be something as simple as he wants to eat at this time rather than our normal supper time, or something like that. There are so many things that are going to be different. No two days are the same,” Neumeister said.

She realized she needed more help caring for Ernie as his disease progressed.

“A friend of mine told me that she had a lady that helped her look after her aunt when her aunt was in the home. Then I remembered a friend of mine from the church. She looked after her mother until her mother passed. So I contacted those two people and asked if they would be able to help, and they have stepped up,” the Orangeburg resident said.

Ernie’s neurologist has informed the couple that the disease has continued to progress, making recent treatments for Alzheimer’s disease not very useful for him because they are more effective in the disease’s early stages.

“One thing that I really, really appreciated about him is that he said, ‘And how are you doing?’ He said, ‘You’ve got to take some time for yourself.’ … I took that to heart and was thinking about that. Shortly after that was when we started with helpers and so forth,” Neumeister said.

She has accepted that her husband and father of their three children will never fully regain the cognition he has lost.

“I guess I just accepted it, knowing that we were going to be in a different part of our lives now. … When I say I was accepting, I don’t mean that in a nonchalant way,” Neumeister said. She knew it was a possibility because her husband’s mother also had the disease.

Her volunteer caregivers are not with her 24/7 to help care for her husband and she is unsure of when she’s even going to need help.

“I don’t know those times. I don’t know whether there’s a time when he’s got to change clothes two or three times, or when he’s going to get fidgety and just be walking around and so forth. It’s not like you could have somebody that needs help early in the morning to get dressed and then at night to go to bed. I mean, it happens all throughout the day and throughout the night,” Neumeister said.

“We have to figure out things that work for him, things that work for me,” she said.

She wishes more resources were available in the care of individuals with Alzheimer’s.

“I did not realize until a couple of weeks ago that there was even a support group in Orangeburg. I happened to see it at my doctor’s office, and I tried to call. I didn’t get a response, but, anyway, I got through one time. … But the fact that there are not more places that publicize, whether it be at a doctor’s office, whether it be where you pay your taxes, or having a list of caretakers. Some of them I think are with agencies, others are not with agencies. Let people know that they have choices about that. … I don’t know what’s available in Orangeburg,” Neumeister said.

The couple attend Orangeburg Lutheran Church, which is home to a Memory Café that provides music, fellowship and light refreshment for individuals with Alzheimer’s and their caregivers.

“It’s just a time for the caregiver and the patient to get out. … I’ve taken Ernie to most of them, but you know that there are people out there that would just enjoy being able to bring somebody, sit down, have a little lunch and talk to other people…. It takes a lot of time to be a caregiver, so it might be more difficult to get the person there,” Neumeister said.

She said the support of the church, along with the couple’s children and neighbors, has been invaluable.

“People have just been encouraging. They’ve been kind, supportive and offered to help in any way, whether it be for him or for me. We’re just thanking God we have more good days than bad days,” she said.

It’s the little things she has grown to appreciate even as she acknowledges the possibility that she may have to seek long-term care for her husband.

“I know there’s a limit to what my skills are, but my children and I agree that for as long as we can, we want to have him in a place that hopefully he knows. I’m appreciative that we still can do some things. I mean, we still can go to church and do some church activities,” she said.

“I am very thankful that we can still go out to eat. I know that it’s not going to get better, but I want to take advantage of the time that we have to do the things that we can.”

They’ve had to make adjustments, including in the way they celebrate milestone marriage anniversaries, but she’s thankful they still have that same love they shared when their journey began 57 years ago.

Ernie’s neurologist, for example, asks him to write a sentence as part of the testing that he undergoes during his visit.

“Every time he writes the same sentence: I love my wife. Although things are different, I realize that he still feels the same even though he can’t express it. That sentence means a lot. As they say, for better or worse, and we’ve had both,” she said.

The Alzheimer’s Association of South Carolina wants to know more about the issues people like the Neumeisters face. It’s poised to address the disease with an upcoming community needs assessment.

‘This is a community problem’

Taylor Wilson, governmental affairs specialist with the S.C. Alzheimer’s Association, said a community and health care needs assessment will be conducted in Orangeburg County to target the optimization of care and resources in the fight against Alzheimer’s disease or related dementias, or ADRD.

She addressed the Orangeburg County Legislative Delegation in November about the county’s “staggering” prevalence of Alzheimer’s disease.

The association has since snagged a $8,000 grant from Atlanta, Ga.-based Alliant Health Solutions to conduct the assessment, which will include community town halls across the county.

“We’re also looking to engage with health care entities about their barriers. Before we get to any of that, though, we have to engage our stakeholders. They’re the ones already doing the work. So we’re looking to try and engage with them sometimes in the month of June or July. Hopefully June because that’s Alzheimer’s and Brain Awareness Month,” Wilson said.

The association wants officials to articulate what their needs are, such as senior centers, area offices on aging and federally qualified health centers.

“We’ll start to pull out what all the issues are first and then start to ask, ‘How do we pool resources? Are there ways that Orangeburg has an opportunity to have multiple partners on a grant that can be applied for through the Chamber of Commerce?’ Almost a quarter of all caregivers of a loved one with dementia are sandwich caregivers, meaning that they’re caring for a child and their aged parent or aged family member,” she said.

Wilson continued, “A lot of these folks are still in the workforce. Business has a vested interest in trying to keep these people because you don’t want to have turnover.”

According to the state’s Alzheimer’s Disease Registry, 2,019 individuals in Orangeburg County were living with ADRD as of 2021.

The county has seen a 121 percent increase in documented cases since 2000. African Americans in the county were 28 percent more likely to have ADRD than their non-Hispanic white counterparts.

While most individuals with ADRD were 65 and older, 9.6 percent of county cases were under the age of 65. At the time of diagnosis, 73 percent were living in a nursing facility and 23 percent were living in the community, which could include assisted living environments. The living situation of the remainder is unknown.

Statewide, African Americans were on average 35 percent more likely to have ADRD than their non-Hispanic white counterparts.

The county’s statistics referenced in the Alzheimer’s Association’s 2024 Alzheimer’s Disease Facts and Figures report were just as alarming. While the state’s Alzheimer’s Disease Registry numbers are based on recorded cases in the state, the 2024 Alzheimer’s Disease Facts and Figures report uses calculated prevalence estimates that ranked Orangeburg County eighth highest in the country out of 3,142 counties in Alzheimer’s prevalence at 15.2 percent of those 65 and older.

While only counties with 10,000 or more residents aged 65 and older were included in the national report’s ranking, Allendale (15.6%), Bamberg (15.8%), and Williamsburg (15.4%) counties were also above a 15 percent prevalence rate within their populations of people aged 65 and older. Calhoun County has a prevalence rate of 13.4% among the same population.

The national report also found that African Americans are approximately twice as likely to have Alzheimer’s and other dementias as older whites, and older Hispanics are about one and a half times more likely to have Alzheimer’s or other dementias as older whites.

“A step further than us getting support for caregivers and families facing dementia is preventing cases in the future. We want the next generation to have better health outcomes. What kind of education do we need to pull into the community about a healthy brain and body? How do we talk to folks about it – not just about controlling your blood pressure, but also staying social?” Wilson said.

“We’ve got to figure out where people are because if you come in and bulldoze with something when you don’t have a knowledge of the community, a community needs assessment is not going to be successful. It’s about having those primary care providers having those health conversations we know they’re already having to reduce stroke risk, blood pressure and heart disease. It’s just adding in, ‘And this will protect your brain, too,” she said.

The 2024 Alzheimer’s Disease Facts and Figures report revealed there were 6.9 million people aged 65 and older in the nation living with Alzheimer’s Disease, including 112,500 in South Carolina. The state ranked eighth in the nation for Alzheimer’s mortality rates.

The report also revealed that both dementia caregivers and health care workers report difficulties in navigating dementia care within the U.S. health care system.

The cost of caring for people living with Alzheimer’s and other dementias in the nation is projected to reach $360 billion this year, increasing to nearly $1 trillion (in today’s dollars) by mid-century. Last year in the state there were 219,000 dementia caregivers providing 361 million hours of unpaid care valued at more than $5.5 billion.

The national report also revealed workforce challenges, with the number of geriatricians in the state needing to increase by more than 300 percent to meet health care demands in 2050. A more than 30 percent increase in the number of home health and personal care aides would be needed to meet demand in 2030.

“There are going to be less caregivers than there are elderly people because our birth rates have dropped. That’s going to happen in our lifetime. So even if I have enough beds, that’s not the solution if I don’t have enough people to care for them. So the solution has to be prevention, it has to be community engagement, and it has to be training to be able to properly diagnose and treat people who have” Alzheimer’s and other forms of dementia, Wilson said.

“We’re going to look at just the community aspect of this and say, ‘What do you all need?’ Is there a way that we could get some resources together and drop them off at all the doctors’ offices so that when they diagnose somebody with dementia, they can go? Also, [we want to say], ‘Here are all the places that you can go to get help,’” she said.

The state’s health care system is also being affected. For example, there are 1,558 emergency department visits per 1,000 people with dementia. Medicaid costs to care for people with Alzheimer’s stands at an estimated $652 million.

The state’s caregivers, like those across the country, were also revealed to be facing significant emotional, physical and health-related challenges as a result of caregiving. According to the report, dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes and cancer compared to caregivers of people without dementia or non-caregivers. Sixty percent of caregivers in the state reported at least one chronic condition.

Wilson said younger individuals are also being diagnosed with Alzheimer’s, and newer treatments such as Leqembi and Donanemab are more effective in the early stages of the disease than the later stages.

“We also know that dementia patients have a hard time managing other diseases they may have. We needed medication management and co-morbidity management because 80 percent of all dementia patients have other chronic conditions,” she said.

Early diagnoses will be key in battling the disease, she said.

“We’ve got to get people to stop being so afraid of the stigma that’s attached to this. The only way we’re going to do that is by making a community that’s kinder to the news. It’s about the community changing the stigma, not the disease. How can we be more dementia-friendly? How can we reach out to people? That’ll be the next step because you don’t want a community needs assessment that sits on a shelf,” Wilson said. “We’ve got to make sure that anything that comes from a community needs assessment is put in the hands of the people who are going to move it in Orangeburg County.”

Individuals seeking more information on how they can be a part of the needs assessment planning can email Wilson at twilson@alz.org. She said individuals seeking help with care and support can also call the national Alzheimer’s Association’s 24/7 help line at 1-800-272-3900.

‘A big problem with access’

Dr. Tushar Trivedi, a neurologist and stroke program director at MUSC Health Orangeburg, is the county’s only neurologist.

“In the community, not just in Orangeburg, but in South Carlina, there’s a big problem with access. There are a very limited number of neurologists, so the wait time and the access for patients to be seen by a neurologist is a little difficult,” Trivedi said.

“I also think another important factor is just increasing awareness in the general public and among primary care providers that screening patients with changes in the memory and decline in cognition very early is extremely important,” he said.

Many of the specific tests and images needed to start patients on the newer Alzheimer’s treatments are not covered by insurance, Trivedi said.

“That’s a big limitation for us to find the right set of patients who could benefit from these treatments. I think that, long-term, as policymakers expand coverage for these tests, that would be really beneficial for the patients,” Trivedi said.

He said there are more than 10 different types of diseases that can cause dementia, or a decline in brain function.

“The majority of them are Alzheimer’s, which accounts for about 60 to 70 percent of all dementias. The second most common type is vascular dementia, which accounts for 10 to 20 percent of all dementia types,” Trivedi said.

Vascular dementia is a general term describing problems with reasoning, planning, judgment, memory and other thought processes caused by brain damage from impaired blood flow to the brain.

“In South Carolina, I think the prevalence overall of dementia is around 11 percent from data from 2020. If you look in some of the rural counties like Orangeburg, the prevalence is even higher partly because I think the vascular dementia is higher,” he said.

Residents of rural counties are more likely to have cardiovascular conditions like high blood pressure, diabetes and obesity, he said.

“The vascular dementia is higher in Orangeburg and other rural counties. The vascular dementia is significantly higher in certain racial groups, especially more so in Blacks,” he said. That’s because cardiovascular conditions are “disproportionately more common” among that population.

Finding access to long-term care is another problem in rural counties.

“A lot of our patients who are on Medicare and Medicaid for different reasons do not have access to specialized residential care or facilities just dedicated to Alzheimer’s or dementia. Many times the family members end up taking care of them,” he said.

Many families are asking for more support.

“We unfortunately have limited things to offer here. If we could look to double-up dedicated support groups in the community that can help family members in accessing available community resources, that could be really helpful,” the neurologist said.

He noted that caregivers of individuals with Alzheimer’s often face big challenges.

“It’s usually their children. It’s difficult. It becomes a full-time thing. It’s very difficult for them to leave their jobs and just be at home, but at the same time these patients many times need 24-hour supervision,” Trivedi said.

He said individuals with Alzheimer’s or other forms of dementia are commonly readmitted to the hospital for inpatient care because of other conditions.

“They’re not diagnosed, or they’re not getting adequate care, and … this is a subset of the population which is also very high-risk for having other complications like infections. As a result, they keep coming to the hospital for different reasons,” Trivedi said.

Echo McAlhany is director of ambulatory operations at MUSC Health-Orangeburg. She said as the population ages, diseases such as Alzheimer’s are going to become more prevalent – and worse – in the community.

“In areas like Bamberg and here in Orangeburg, even access to care is so limited because we have a limited amount of providers and even access points for health care. So there’s not enough primary care even in South Carolina to take care of the aging population, or individuals that have multi-chronic diseases,” she said.

McAlhany said dementia-friendly urgent care is not currently possible because there are not enough providers and facilities, particularly in rural areas.

She said MUSC Health-Orangeburg is working to improve its number of providers.

“We are trying to recruit a second neurologist. We’re also trying to expand in our family medicine space in Orangeburg and some surrounding counties. The recruitment of four to six primary care providers is one of our strategies for fiscal year 2025. We’d love to see more mental health providers in the area. We don’t have enough mental health resources. That would definitely help,” she said. Health education is also a critical component of care.

“That’s why we try to partner with different associations and groups to help with those types of resources, social workers and community health workers,” McAlhany said.

She noted that having only one neurologist in the county presents challenges.

“He deals with all the neurological diseases that present to the hospital. That would include Alzheimer’s and dementia. He’s trying to deal with all that’s coming into the hospital, and sometimes we have delays in patient care in the outpatient setting because he’s (in the hospital), and he’s working in the hospital with emergent patients,” McAlhany said.

‘It is a health crisis’

The Aiken-based Lower Savannah Council of Governments, which serves Aiken, Allendale, Bamberg, Barnwell, Calhoun and Orangeburg counties, is home to a Family Caregiver Support Program.

LSOG Aging, Disabilities, Transportation Resource Center Administrator Judith Richburg said the program includes many services, including providing $1,500 grants to relieve caregivers.

“When you’re doing this for long term, burnout for the caregiver comes in. That’s why we support the caregiver with resources such as the grant, where a third party would come in and provide respite. Also, part of the grant could be used for supplemental items. We assess their needs and then we meet them and try to get them the support that they need,” Richburg said.

A Seniors Raising Children program provides services to adults aged 55 and above who have primary responsibility for grandchildren or other children who cannot remain with their parents.

“And then in between all of that, we have support groups and counseling sessions. We’re shoring that up, and then we do outreach. We have a wonderful program called Trualta, where any caregiver can access the web-based platform and get tips on how to deal with a senior with dementia or Alzheimer’s disease. It’s no charge for everyone throughout our region,” Richburg said.

“We as human service professionals are coming together to have the community be aware of our services and for them to access the services that they need,” she said, noting that the population of individuals aged 75 and over is growing.

“And as that grows, we are faced with more complex issues that sometimes also include dementia and Alzheimer’s. We also offer a homemaker program and a personal care program. With the homemaker program, two hours a week is provided to a senior in their home to keep their environment clean and to assist them with their laundry. It also provides them with some companionship. Personal care is a minimum of three hours per week, where it’s for bathing and addressing other personal needs. Low-income seniors are our target area, but no one is denied service,” Richburg said.

“Our programs are not based on income. They’re based on need,” she said, noting that the LSCOG also administers a home-delivered meal program.

“That’s good for individuals with dementia that are at home because they need assistance preparing a meal. … We couldn’t do it without the volunteers, community partners and others that align themselves to assist the seniors in the community to help them live out their lives in a familiar setting and among people that they know and love,” Richburg said.

LSCOG works closely with the Orangeburg County Council on Aging in the administration of their home-delivered and congregate meal programs.

“They do an excellent job, and they’re looking for more innovative ways to serve. People sometimes don’t think that they can bring their loved one who has dementia or Alzheimer’s to a meal site, but we would welcome them to come with their loved one and have a meal with us,” Richburg said. Council on Aging centers can and do refer individuals with Alzheimer’s disease or other forms of dementia to the LSCOG for services.

“We do presentations with the seniors so that they are aware of the programs. … With help and with volunteers and donations, we can do a lot more,” she said.

The LSCOG received $104,333 in funding from the state for Alzheimer’s specifically and “for the Family Caregiver Support Program, we have over $400,000 to provide support for the seniors,” Richburg said.

“Every year the dollars do change. … We are in Orangeburg providing those services, and we look forward to continuing to do that and even more,” she said.

The Rev. Fedrick A. Wilson, pastor of Live Oak AME Church in Vance, is also executive director of the S.C. Respite Coalition. He described the prevalence of Alzheimer’s disease in Orangeburg County as a crisis.

“It is a health crisis. African Americans are affected by this crisis by a large, disproportionate rate. Our community needs to come together to work to provide resources and support for families, caregivers particularly, and care recipients who are affected by dementia and Alzheimer’s,” Wilson said.

“Orangeburg County has alarming numbers related to Alzheimer’s and dementia. Our organization, along with many others, works with caregivers every day. I believe it is vitally important for the community, community partners, nonprofit organizations and the health care system within the county to work together and address it in Orangeburg County,” he said.

“It is a problem too big for one organization or entity to handle alone,” Wilson said.

He called the LSCOG programs “a tremendous resource.”

“We’re working with state agencies to increase respite opportunities. We even provide scholarship opportunities for special needs camps. We also lead the state committee on respite and regional advisory committee to engage community and statewide organizations,” Wilson said.

The coalition sees a definite need to increase awareness within Orangeburg County of available services.

“In order for these services to be readily accessible to rural and marginalized communities, we really need the support from the state legislature to increase funding for respite services. It is vitally important that the state legislature fund opportunities for expanding respite statewide, making sure that respite opportunities can be more accessible, especially in communities such as Orangeburg,” the pastor said.

He believes coordination of services will improve.

“We’re already working together to create a system of sharing resources and services. Just increased collaboration and partnership would be helpful in addressing the need for family caregiver services,” Wilson said.

Individuals seeking more information about the coalition and its services can call 803-935-5027 or visit www.screspitecoalition.org.

Legislators speak

State Sen. Vernon Stephens, D-Bowman, an LSCOG board member, said Orangeburg County is a rural county where access to health care services is challenging for many citizens.

“Then the most alarming part of it is a lot of our citizens don’t have a primary physician. That just simply compounds the problem, … but I’m more so trying to home in on what those community health care service providers can help us with in getting this across,” Stephens said.

“The care that these individuals (with Alzheimer’s) need, we can’t always provide that at home, especially if we’re working. We’ve got to look at the whole scope of this: early detection and then providing services thereafter,” he said.

“We have to look at it from a state perspective and from a federal perspective. We have a lot of citizens who are in desperate need of the care that family members can’t provide, and it will take someone with a professional degree, or professional training to help deal with the issue as it relates to Alzheimer’s and home health services,” the legislator said.

“I’ve been seeking funding for (Summerville-based) Medical Ministries Inc., which is a free clinic. They are going into communities throughout the region and providing simple medical services: doctor’s care, screenings and things of that nature. That is one of the components I think I can have an immediate effect on,” Stephens said.

State Sen. Brad Hutto, D-Orangeburg, said Alzheimer’s disease touches every family at some point.

“More resources are needed to assist those families who need help in caring for a loved one with dementia. I have long advocated for the expansion of Medicaid under the ACA. I recently visited North Carolina, which expanded its coverage last year, to meet with legislative leaders there to discuss the impact of the expansion,” Hutto said.

The results were positive, he said.

“It has inspired me to again push for South Carolina to expand coverage. I hope this can happen next year. In the meantime, South Carolina is moving forward with the consolidation of agencies dealing with health. I co-sponsored the bills for this new health agency. Our goal is to have all of our state health care agencies operating as one so that citizens will be better served,” he said.

Hutto said individuals with mental issues many times also have an issue with substance abusee.

“By creating one agency, we hope to have a one-stop shop for the delivery of state services rather than having people feel that they are being bounced from agency to agency. I will continue to advocate for state resources to address this disease (Alzheimer’s) that affects so many of our residents,” he said.

State Rep. Gilda Cobb-Hunter, D-Orangeburg, said, “It’s not just the patient who has Alzheimer’s. It’s also the family, the caregivers and the system itself. Depending on the amount of resources that a family has, that determines in a lot of cases what kind of care the patient receives, and I’m talking specifically about long-term care.”

She continued, “Unfortunately, in most of our households, there is either no long-term care or limited long-term care. … I personally would like to see us do more as far as funding for respite care. I think we did on the House side add funding for respite care which is just for caregivers, but that is not adequate. A lot of Alzheimer’s patients require 24-7 care and can’t be left alone. It’s just really sad from my perspective as a social worker to hear and see the stories.”

She said there was also “a real major problem,” particularly as younger people under age 60 are being diagnosed with the disease.

“Then we live in a state where we don’t want to expand Medicaid. We have Congressional representation at the federal level that is trying their best to gut Social Security. It’s just frustrating to have to deal with people who don’t seem to appreciate that not everybody was born on third base,” Cobb-Hunter said.

She said the role of government is to help, particularly with a disease that affects people across all races and socioeconomic backgrounds.

“That’s why I’ve always fought for state employee pay raises. The pay is so low that probably for some people, their retirement check is barely enough for them to make it. When you add to that some health care challenge like Alzheimer’s, or caring for someone with Alzheimer’s, we really need to be serious about services for people in this state,” she said.

Cobb-Hunter said it will take a collaborative effort to put a dent in the prevalence of Alzheimer’s disease in the county, noting that she commends the existing work of the state Alzheimer’s Association in the local community.

“We shouldn’t be relying on individuals to combat this problem. We need all hands on deck, and that means the local, state and federal governments, as well as the private sector,” she said.