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Special facilities offer top care, but at a too-high price for many

Tuesday, December 12, 2000

By Gary Rotstein, Post-Gazette Staff Writer

The past decade has offered Pittsburghers whose loved ones suffer from dementia a choice of homey, attractive facilities to provide care when relatives can no longer shoulder the burden.

 
    Getting help

1. On the Internet, the national Alzheimer's Association web site, www.alz.org, answers many questions about the disease.

2. The Greater Pittsburgh Chapter of the Alzheimer's Association offers information, home visits and support groups. Call 1-800-652-3370.

3. The University of Pittsburgh's Alzheimer Disease Research Center offers free evaluations, follow-up treatment and participation in clinical studies to many individuals. Call 412-692-2700 for more information.

4. The Alzheimer's Disease Education and Referral Center of the National Institute on Aging mails numerous helpful publications, in addition to providing information over the phone. Check its web site at www.alzheimers.org or call 1-800-438-4380.

 
 

Nostalgic music and soft lighting, safely confined courtyards and gardens, and flexible, round-the-clock staffs and programs can benefit individuals at different stages of Alzheimer's and related diseases, most experts agree.

The public, however, has sometimes balked at paying top dollar for such features.

Some of the national chains and local ventures specializing in personal care homes for dementia in the past several years haven't come close to filling their beds and have lowered their fees, which still typically range between $2,500 and $3,500 a month.

There are 36 personal care homes with specialized Alzheimer's units listed in Allegheny, Beaver, Butler, Fayette, Greene and Washington counties by the Greater Pittsburgh chapter of the Alzheimer's Association, compared with 20 such listings just three years ago. In addition, it notes 23 nursing homes with special units, up from 21.

"I don't think you are going to see many more of these new buildings made just for Alzheimer's," said Elaine Dively, an Alzheimer's Association social worker who visits such facilities to provide staff training and also gives advice to families looking to place someone outside the home.

"They are beautiful and have the right staff training, but their prices were a bit higher than what most people in this area could afford," she said.

Because of stiff competition during its startup two years ago, Arden Courts of Monroeville lowered fees for most of its 56 beds by about $400 to $2,700 monthly. Alterra Clare Bridge of Cheswick opened with a rate of $3,500 monthly in January 1998, and costs now are mostly between $2,500 and $3,000.

Those and other facilities opened in the same late-1990s span in an unusual local market. They found families here take care of their relatives at home longer than counterparts across the country. And they found people can be thrown by fees that are usually well above those of traditional personal care homes. The facilities maintain the costs are justified to recoup construction costs and cover the level of 24-hour staff, programming and general care they provide beyond what's available in traditional homes.

Under the state's broad regulation of the personal care home industry, there's no requirement that facilities advertising Alzheimer's care actually provide special services or treat residents differently from those without dementia. There's also no government funding available in most cases to help with the cost of an Alzheimer's facility or any personal care home, although all residents of nursing homes, including those suffering from dementia, can have costs covered by Medical Assistance if they meet income requirements.

Donald Helton, 29, assists his grandmother, Mary Gonzales, with all of her basic needs in their Elizabeth Township home. Andy Starnes, Post-Gazette)

Rebecca Residence, which relocated from Wilkinsburg to a new 120-bed facility in West Deer 14 months ago, provides both personal care and nursing-home care in different sections for all types of patients. At the personal care level, fees for regular apartment units are $500 to $1,000 less than the cost of secure quarters in the Alzheimer's wing, which keeps people from wandering off the premises.

Susan Tkach, Rebecca Residence's admissions and marketing director, is accustomed to hearing people comment, "Mom isn't quite ready for this yet," when they see the Alzheimer's personal-care wing, which has eight out of 20 beds occupied. Children often seek to place a parent into one of the facility's non-dementia units, even when it's inappropriate for them.

"Some people are willing to pay $2,000 [monthly] but not $3,000, and some people don't like the idea of a locked unit," Tkach said. "That can be hard for people to face -- it still carries a lot of negative connotations for them."

The secure environment, however, is one of the main advantages of a properly designed dementia care facility. Special door locks or codes or alarms prevent people from leaving the building without the staff's knowledge. Residents also get cues from special design features to help them remember where their rooms are and where the bathrooms are.

The most important aspect of such facilities, say professionals who study Alzheimer's patients, is their ability to provide attentive, consistent and flexible staff who have special understanding of how to handle people with dementia. A tight labor market has made it harder to find and keep good workers, but good facilities will still make sure their staffs learn their residents' needs and adapt rather than imposing their own structure.

"Two of the things we tell families to look for is the staffing and the activities level. You don't want to go to a place where everyone is just sitting around the TV for hours and hours," Dively said.

"If I have one disappointment in a lot of facilities, they don't take the time to give aides personal information about the people they're caring for, the things they could talk about while bathing somebody. I wish the person giving the care knew more about what the person was like."

Dively said families that don't see specialized Alzheimer's residences as affordable or necessary should at least consider the possibility of placing their relative in adult day care two or more times a week, to give that person more stimulation and provide the caregiver a break. The 40 or so such day care services in Allegheny County can cost about $40 a day, with subsidies possible through the county Department of Aging, depending on need.

Local caregivers' attachment to relatives at home compounds problems for the personal care home operators, because by the time anyone is brought to them, his dementia has typically reached a costly, debilitated level.

Still, such individuals may benefit from programmed activities, socialization and more attention than a single caregiver at home may be able to provide. The 36 residents of Woodside Place in Oakmont, the area's first specialized dementia facility when opened by Presbyterian SeniorCare in 1991, are encouraged in various basic activities such as gardening, housekeeping and singing that still give them a sense of satisfaction, said Anna Scott, Presbyterian SeniorCare's dementia service coordinator.

She said the residents in moderate-to-severe stages of Alzheimer's may not be able to verbalize their interest in such activities, but they can still show pleasure in quiet ways by smiling or tapping their toes to music.

Judith Saxton, director of training and information for the University of Pittsburgh's Alzheimer Disease Research Center, said Alzheimer's patients will give clues of their satisfaction level by how they interact with staff, and it's up to family members to act as advocates for them in evaluating the facilities.

"I don't think families should feel guilty" if they save money by bypassing specialized Alzheimer's care facilities, Saxton said. "There's no evidence it's going to change the progression and change the decline [of the disease]. I do think the programming that these Alzheimer's facilities provide can keep the patient operating at an optimum level for whatever stage they're at."

"We can do it because we're here 24 hours a day," Scott said of the attention that can be provided at a facility like Woodside Place, which has always been full despite annual fees per patient above $45,000.

"There's more than one of us, and you can't do it at home without getting exhausted," Scott said. "While we're progressing toward some wonderful things in [Alzheimer's] research, I don't think we're there yet, so Woodside Place is a necessity."



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