As increasing numbers of North Carolinians age into Alzheimer's years, people with the disease will likely have trouble finding long-term care unless they can afford its high costs out of pocket.

In the Triangle, an informal survey of long-term care homes indicates that there are more than twice as many private-pay assisted-living beds designated for people with dementia than for people whose care is paid with tax dollars. Private-pay patients can easily spend upwards of $50,000 a year.

Across the state, a little more than one in four beds licensed for special care are occupied by public-pay residents, state records show.

"I went to all of the assisted living centers within a 50-mile radius," said Clayton resident Zanna Swann, who recently spent two months looking for care for her mother, Brenda Baker. "All of them had waiting lists."

With few options available, care often falls to relatives ill-equipped to deal with Alzheimer's patients at risk of wandering. And when a care home does have an opening, it's often at a facility that also accepts people with mental illness, or at medically intensive nursing homes, where Medicaid allows higher incomes, even though residents with dementia might not require that level of care.

"It's killing us," said Gail Holden, director of aging and adult services in Wake County. "The families are getting angrier all the time; they don't know where to go."

Many people have too much money to qualify for assistance, but not enough to pay for private dementia care.

People such as Baker, 66, who has dementia and can't afford the fees associated with private-pay, can get their fees covered by state-county and Medicaid payments, but only after using up all their assets except $2,000. Zann found her mother a spot at the Covington on Duraleigh Road, a newly converted center that accepts both private-pay and publicly supported residents.

With many centers converting to private-pay dementia care, it's a growing issue for families seeking care, say officials at the Alzheimer's Association office in Raleigh.

"Many times, I have not known what the answer is for our families," said Dee Dee Harris, family service director at the office.

North Carolina started setting higher staffing and training requirements for dementia care in 2000 and began paying higher rates for these locked units in 2005. The extra money spurred owners to open more of the special Alzheimer's units. During the past 30 months, the state has licensed more than two a month, but the beds are mostly reserved for people who can pay rates of $50,000 a year or more out of pocket, industry officials said.

"It is going to be a rare situation that you find more than 10 percent of the beds in a special care unit that accept Medicaid," said Jerry Cooper, executive director of the North Carolina Assisted Living Association. "Folks just can't do it -- the cost of the staffing and training and security is just too high."

Private care is costly

In Durham, Bell Senior Living just unveiled Seasons at Southpoint, a dementia-care center with 51 beds. It's the result of extensive renovations to a former 70-bed assisted-living center, Homeplace of Durham, which accepted Medicaid patients.

Allison Lee, sales and marketing director at the center, said semi-private rooms start at $3,500 a month, and the most expensive single room is $4,700. The center has six rooms that are available to public-pay residents; all are spoken for, Lee said.

"People that move in and pay private pay for at least a year will have the opportunity to transition to Medicaid," she said.

Christopher Ivy, a supervisor at Durham County social services, said about 150 beds in the county that once accepted Medicaid have been converted to dementia units that accept only private pay.

"We have companies deciding not to accept Medicaid who have accepted it in the past," he said. "The state reimbursement rate is probably too low."

Young are hit, too

As Chad Thomsen, 37, searches for a place to look after his wife, Roxanne, he remembers her as she was: "Really smart, really outgoing, always trying to organize events and always to have fun."

Three years ago, a progressive disease called frontotemporal dementia started changing Roxanne, now 41, first in subtle ways and then profoundly.

Frontotemporal dementia stems from changes in lobes of the brain that can leave patients apathetic, emotionless and unable to function. Roxanne's disease started before the birth of their son, Carson, who is 23 months old, and progressed markedly last spring.

She's an example of the increasing numbers of younger North Carolinians with dementia, Alzheimer's Association officials said. Finding a state-assisted spot for Roxanne is proving difficult, Chad Thomsen said.

"Obviously, someone at my age doesn't have long-term care insurance," he said. "We are in the retirement-savings years."

Greeted with the word that center after center doesn't take state assistance, Thomsen is looking for any possible solution.

"We're kind of in negotiations with the family, with my in-laws, about possibly moving her down to Florida, where they live," he said. "It's really hard to say what's going to happen. We're trying to find the best solution."

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