This story originally appeared in the June 2 edition of the weekly LINK Reader. To get these stories first, subscribe at linknky.com/subscribe.
When Terri Burke’s dad was diagnosed with dementia, she quit her job and moved back to Northern Kentucky to help care for her aging parents, who were each experiencing different types of health issues.
“I first started noticing my dad’s health decline and dementia right about the same time my mom started having physical health declines,” Burke said.
Still, she said, she feels really lucky.
“I was able to make the decision to move near my parents based on my values, which I always said (were) ‘family first,’ ” Burke said.
Burke is not alone on her path to becoming a caregiver, and many more people are likely to follow suit in the coming years as the youngest baby boomers turn 65 in 2030.
The number of people over 65 in the U.S. is expected to surpass the number of children in 2034, according to a 2018 study by the U.S. Census Bureau. Work is underway to see how COVID-19 deaths have impacted the pace of this prediction.
Today, seniors over the age of 65 make up about 16% of the population in Boone, Campbell, and Kenton counties, according to Census Bureau data, but that estimated number may hit 20-25% within the next seven to 10 years. As of 2022, meanwhile, children under 18 in NKY account for about 23% of the 402,000 estimated Northern Kentuckians.
An aging population means more people at every income level will need care.
When it became a struggle for her mom to go up and down the steps of their two-story home, Burke was able to persuade her parents to sell their home and move into an independent-living residence at Madonna Manor in Villa Hills.
Independent-living communities in Northern Kentucky typically focus on supporting the social needs of residents, who are generally able to manage activities of daily living that include eating, bathing or showering, dressing, getting in and out of bed, walking and using the bathroom.
Such facilities provide help with the activities of daily living, while a traditional nursing home or hospice is recommended for those who may not have consistent cognitive functioning. Other types of residential elder care may provide more intensive care over short periods of time, such as for rehabilitation after a surgery.
Burke carefully weighed the financial decision to relocate near her parents and determined, with help from a financial adviser, that she had enough savings to pause her career in project management and make the move from Memphis, Tennessee.
She recognized that not everyone has the freedom to make the same choice. Many people find themselves in the role of caregiver to their parents while also raising children, for example, while some have demanding health issues of their own. Others may have parents who are struggling financially and may have less access to the care they need for their health or may be stuck on waiting lists due to limited resources.
All of the “little things” Burke does for her parents help them remain in an independent-living residence despite her dad’s cognitive decline, she said. If she were not able to help as much with those tasks, she might have to move them into a much more expensive assisted-living facility.
Burke also takes her dad to the Charles Club at St. Charles in Covington for adult day care to help with his dementia, which she said was initially a struggle to get him to attend.
“He would ask me, ‘Why am I going here?’ every time I would drive him, but now he’s happy to be there and shaking peoples’ hands and smiling when he leaves,” Burke said.
Even with the social opportunities at Madonna Manor, her dad’s dementia leaves him struggling to keep up in conversations, especially in larger groups.
In addition to potentially slowing her dad’s cognitive decline, an additional benefit of adult day care is the respite it provides to spouses and other caregivers for patients with Alzheimer’s and other forms of dementia, according to the Alzheimer’s Association website. Medicare does not cover the cost of the service, even for patients with dementia, unless it is part of hospice care. Medicaid covers the cost of the service under some conditions, but space for Medicaid patients may be limited, and there are often waiting lists.
Margie Volpenhein, a community liaison at the Senior Resource Center in Latonia, knows all too well how difficult it can be for seniors who qualify for Medicaid to go through the process of getting approved and accessing services.
“It’s so difficult for a senior to be put on a waiting list for something they need,” Volpenhein said. “The news often arrives just at a point where they start feeling maybe everything’s going to be all right, but then there’s a waiting list, and they are just supposed to wait.”
Often the steps seniors need to take to obtain care or housing may seem straightforward, but Margie Volpenhein’s work exposes hurdles in the system.
“We get people who can’t read, so we have to help them fill out applications for things like Medicaid and subsidized housing,” she said.. “Often we sit with people and order birth certificates and Social Security cards because they just don’t know where they are.”
Volpenhein, who is a licensed social worker, said this growing need, especially among the low-income population, is why the Senior Resource Center exists. St. Charles Community created the center and funds the organization and its two full-time staff positions.
“When I was at St. Charles, people would call us mistakenly saying, ‘Mom needs a nursing home.’ But, No. 1, she doesn’t actually need us. No. 2, she can’t afford us,” said Volpenhein. “We would listen and help guide them to where they needed to be and help them understand the maze behind all the resources. But we wanted to reach more people and particularly low-income folks.”
“I have been well-educated since I have been down here,” said Volpenhein, who said the need among seniors is much greater than she initially anticipated.
“We have people walking in that are at risk for homelessness or people who need much more – a ramp or rollbar in their home to stay independent,” she said. “We see people who need food. We use funds to help people get what they need just to get by from day to day. A lot of times, it’s just a Band-Aid until we can get the resources they need.”
The Northern Kentucky Area Development District’s Aging and Disability Resource Center provides support with locating and applying to senior services including elder care. For many seeking help in NKY, this is the best place to start. he Senior Resource Center, on the other hand, focuses more on assisting t with the application process itself, although it does overlap the services of the Agins and Disability Resource Center somewhat.
The state of Kentucky, Volpenhein said, also lacks resources on par with what many other states provide to support seniors, such as housing and transportation. For example, Ohio has a Council on Aging that is funded by taxpayers and helps connect seniors with care options regardless of income.
“The whole attitude toward seniors, and particularly those in health care, needs to change, but there is also a need to fund programs seniors need,” Volpenhein said. But the No. 1challenge Volpenhein sees is the lack of affordable housing in the area and its impact on homelessness for seniors.
Rising property taxes and the cost of upkeep for those who own homes also create challenges. A 2021 study conducted by the state of Kentucky cited housing stability as one of the fastest-growing challenges for seniors in communities throughout the United States.
Danielle Amrine, CEO of Welcome House of Northern Kentucky, said she is seeing an increase in the number of senior citizens experiencing homelessness.
“Year over year, it’s about a 20% increase,” she said of the growing number of people over 65 served by the Welcome House Emergency Shelter.
“A lot of these elderly individuals who solely rely on their Social Security or disability are not able to keep up with the rising rent costs,” Amrine said. “Then they have a major health episode and can’t pay rent, or they get their utilities shut off.”
These circumstances can create a fast-moving downward spiral at the same time as they are also confronting some of their toughest health challenges, she said.
“We have an elderly couple that is in our shelter right now that were found very sick,” Amrine said. “They were both very ill trying to live in their car because they were recently evicted after the building they were living in was sold to a new owner.”
The Emergency Shelter has short-, medium- and long-term rental assistance programs that aim to get people into homes, but with an elderly population experiencing homelessness, the challenges are multiplied.
“It’s difficult for some of these individuals we do serve once they’re placed in homes to be able to get home health care they need to stay independent,” Amrine said. “There’s not really a lot of resources for them, and with the staffing crisis we’ve experienced over the last couple years in home health, it’s very difficult for them to get assistance.”
Even those with housing stability and adequate housing may find themselves out of luck when it comes to getting medical needs met due to staffing shortages at all levels and sky-high costs of prescription drugs.
“It’s a jumbled maze trying to get quality care,” said Jeanie Greenwell, a nurse and volunteer legislative advocate for the Alzheimer’s Association. “One of the things we discussed last March in Washington, D.C., is about streamlining care, because there are different agencies that have pockets of information, but there is nothing like a streamlined service for each area for seniors.”
Greenwell, who is active with the Kentucky Nurses Association, worked as a nurse for more than 18 years, including stints at Good Samaritan and Children’s Hospital. She echoed the concerns of others interviewed by LINK nky about staffing at all levels within the health care system that seniors rely on.
“Since COVID hit, we are losing a lot of geriatric doctors in general,” she said. “I know they’re trying to close the gap with nurse practitioners, but nurses are also overwhelmed. The current average age of nurses right now is about age 50, and soon we will be facing a lot of retirement. If we can’t retain new nurses, there is going to be a health care crisis on our hands.”
Scientific advancements have made early diagnosis of dementia possible in those as young as 50, and the test is typically covered by health insurers as a preventative health screening. But treatment to prevent the symptoms from progressing remains cost-prohibitive for most people, according to experts. A drug called Leqembi, for example, was approved earlier this year and typically costs $26,500 for a year’s prescription.
“Our main goal right now with the Alzheimer’s Association is trying to get the Centers for Medicare and Medicaid to cover the three FDA-approved medications for slowing the progression of the disease,” said Greenwell, noting, “every other FDA-approved drug is covered by Medicare except for these Alzheimer’s drugs.”
Despite the drugs being cost-prohibitive, Greenwell advocates for taking the test as early as possible in order to adopt a healthy lifestyle and make financial decisions ahead of the progression of the disease.
“Having a diagnosis, especially when it’s early-onset, gives patients more time for financial planning and to figure out their advanced directive,” she said.
Burke and her family are lucky that they were able to plan while her dad was still able to make sound decisions. She now manages finances for both her parents.
“What’s different about dementia is that it can go on for so long, and it affects the entire family,” Burke said. “My dad’s neurologist said, ‘This disease kills caregivers before it kills patients,’ and I thought, ‘OK, I have to move back. My mom can’t do this by herself.’ ”