Alzheimer’s Care Crisis

Each day spent caring for Alzheimer’s patients poses unending, energy-sapping challenges. There’s the woman who screams in the shower because she finds the experience terrifying. The man who refuses to eat without coaxing. The patient who becomes combative on the way to the bathroom.

Forgetfulness and confusion can be the least of it.

Still, there are rewarding moments, and most of these tasks could be managed with specialized training.

But the legions of nursing aides providing the vast majority of hands-on care tend to have little if any training, earn little more than minimum wage and complain they get little respect or recognition for some of the toughest jobs in health care.

“The patients are often mismanaged by a worker who has good intentions but simply does not understand,” said Debra Cherry, associate executive director of the Alzheimer’s Assn. of Los Angeles.

Not surprisingly, most of these caregivers don’t stay long on the job. At the majority of nursing homes--increasingly populated by patients with Alzheimer’s and other memory disorders--more than nine of every 10 nursing assistants quit each year.

Many walk away from these tasks, which pay an average of $8 an hour, for higher-wage positions selling shoes, serving fast food or cleaning hotel rooms, none of which carry the emotional toll of caring for dementia patients.

But consistent care is critical for Alzheimer’s patients. They have short attention spans and limited ability to communicate. They need extra interaction. Indifferent care from stressed workers or temporary hires can lead to poor nutrition, social withdrawal and physical declines. Without caregivers who know their life histories, likes and moods, residents are more likely to deteriorate.

“Imagine how difficult it would be for a person with Alzheimer’s, who doesn’t always know where they are, who just because of the nature of the disease may be fearful and insecure,” said David Troxel, a consultant to long-term care and dementia programs and executive director of the Alzheimer’s Assn. of Santa Barbara. “Imagine then being cared for by people who may not know a thing about you, an aide who has just started that day, doesn’t know your name very well and doesn’t know your traditions or background.”

Nursing homes and long-term care facilities have long had difficulty hiring and retaining aides. With Alzheimer’s and dementia patients constituting 65% of the growing population of nursing home residents, advocates for the elderly are particularly concerned about how they will fare.

As the number of Americans with Alzheimer’s increases from 4 million today to a projected 14 million in 2050, more patients with the memory-robbing disorder will come to rely on the help of nursing and home health aides. Although 70% of Alzheimer’s patients are cared for at home, there comes a time when many families will need outside help--and it’s getting harder to find.

“This is a crisis clearly understood by the industry,” said Judy Riggs, director of federal and state policy for the Alzheimer’s Assn., at a recent session of the World Alzheimer Congress in Washington, D.C.

“We should be paying attention to these issues because we have this tremendous turnover, because it’s so hard to find staff,” Troxel said. “The problem is some facilities treat their staff badly and expect badly treated staff to treat their residents well.”

Yet in nursing homes and care facilities coast to coast, ambitious administrators are setting out to halt the employee revolving door.

“I do sense from talking with people around the country that facilities are waking up to the importance of orienting staff and training them well. There are many progressive facilities that--because things have gotten so bad--are finally getting serious about training,” Troxel said. “This means not just a 45-minute videotape or lecture on payday; it means role-playing, reinforcement, doing training in people’s native languages.”

Some facilities have also increased wages, added bonuses, and begun offering educational benefits. A few facilities in the Chicago area are paying as much as $11 an hour, said Anna Ortigara, a registered nurse with decades of dementia-care experience.

And, she said, “I’m starting to see 401K plans, good health insurance and tuition reimbursement that we didn’t see 10 years ago.”

The federal government has also recognized the need for training and job advancement, providing a $2.2-million grant to the Service Employees International Union Local 250 in Northern California and Kaiser Permanente, the state’s largest HMO. Union members working for the HMO and community nursing homes, such as housekeepers and clerks, can be trained as nursing or medical assistants. Nursing assistants in nursing homes will be able to train for acute-care jobs at Kaiser. As they move up the ranks, the union will recruit low-income and welfare-to-work recipients to replace them.

Another institution addressing work-force issues through training is L.A. Mission College in Sylmar, the only Los Angeles community college with a gerontology program.

Both the two-year degree and the gerontology certificate available require classes in care-giving, aging and in-home elderly care. The classes stress skills in communicating and coping with Alzheimer’s patients, said Sandi Lampert, a professor in the program.

These skills give home health workers a chance to improve their salary prospects and help welfare-to-work recipients land jobs. The college recently began a certified nursing-assistant program that is awaiting state accreditation.

The Sacramento-based California Assn. of Homes and Services for the Aging, a trade group for nursing homes and health facilities, held conferences in March in Ontario, Sacramento and Fresno that conferred certificates in Alzheimer’s care. The program was organized with the Alzheimer’s Assn. and state health department, said Jan Guiliano, the trade association’s education director.

Ortigara, vice president of program development for an association of Illinois nonprofit nursing homes, assisted-living facilities and in-home health care workers, has been tracking programs that promise to increase worker satisfaction.

She cited a 13-year-old assisted-living facility in Venice that has shown unusually good results.

A Sense of Satisfaction

The facility, dubbed HOME (Helping Our Mobile Elderly), is a charming bungalow filled with sea-green and pink upholstered chairs and overstuffed couches. There, a group of workers lovingly attend to a half-dozen elderly women with moderate and advanced Alzheimer’s disease.

The personalized care, administered with hugs and gentle direction, is the antithesis of what’s typical in a sterile institution. At a larger facility, a single nursing assistant might be responsible for up to 10 patients and residents might do activities in lock step. At HOME, the housemates thrive under a ratio of three residents to each caregiver.

What also sets the home apart is that the caregivers have the time to treat each resident as an individual, have a stake in seeing them thrive--and display unusual job loyalty as a result.

“I just feel like this is my house, not my job,” said Victoria Flores, 55, who has worked at the home for a dozen years and is one of four full-time caregivers. “For lunch, I make the decisions about what they’re going to have. We know what they need.”

On a recent afternoon, Bessie Weinstein, 89, although unable to speak anymore, smiled through a gentle foot massage. Freda Seltzer, 86, was accompanied on a neighborhood stroll. Rhoda Andresen, a frail 88, awakened from a long nap and sat down to the savory scents of homemade meatloaf and sweet potatoes cooked by Flores, who calls her “Rhodita.” Aides made sure Ruth Silton, 90, reapplied her scarlet lipstick after eating; she was engrossed in the newspaper as Al Jolson’s “Mammy” played in the background.

“They’re your mother; they’re your sister,” said Flores, who finds the atmosphere more affectionate, the chores less grueling and the earnings better than in two convalescent homes where “in the morning, we’d raise the beds up, clean the [patients’] faces, fix the breakfast, give showers, make beds, and you had to finish by 12 o’clock.”

At those jobs, she couldn’t provide all the attention she felt her charges needed.

Although such one-on-one care isn’t an option for all facilities, other techniques can also increase worker satisfaction while improving the care residents receive.

One promising method of broadening assistants’ role is called dementia care mapping. The technique, which gives facilities a better handle on patients’ needs, originated in England and has been adopted at a few American institutions, including Heather Hill Hospital, Health and Care Center in Chardon, Ohio, east of Cleveland.

In the technique, nursing aides observe a small group of patients every five minutes over a six-hour span. They document patients’ reactions to activities and interactions with staff, then score their relative well-being. The results are shared among caregivers and used to modify patient care plans.

Art Semlow, a Heather Hill nursing aide, said the process made him feel more integral to his patients’ lives, while making him a more sensitive caregiver: “You see everybody as a person.”

With dementia care mapping, “we are telling nursing assistants we value their opinion. They’re recognizing they have a voice,” said Carolyn Lechner, Heather Hill’s dementia care mapping coordinator. Since the program went into effect, staff turnover has dropped 4% each year, she said. In the last quarter, it was 8.47%, compared with about seven times that nationally.

The Alzheimer’s Assn. is still evaluating the technique, said Marlene Mahn, the organization’s associate director for residential care. Unfortunately, she said, “we still don’t have a tool for evaluating what life is like for the 70% [of Alzheimer’s patients] who still live at home.”

But there are organizations trying to bolster the ranks of aides who make home visits.

The Cooperative Health Care Network in the South Bronx, N.Y., founded in 1985, aims to create high-quality paraprofessional jobs for low-income women, give them greater skills and self-confidence and improve care in the home health care industry. Although base wages for the New York program begin at only $6.25 per hour, rising to $7.50 after eight years’ experience, it offers workers a financial stake in the company, along with vacation, sick leave, health insurance and retirement plans.

“In my first year with Coop, I became a worker-owner,” said Julia Bethea, a former welfare recipient and mother of four. “A lot of us are off public assistance and doing great.”

It All Comes Down to Money

Basic economics remain at the root of the Alzheimer work force crisis. It takes money, from public or private sources, to hire and train enough workers.

California’s Medi-Cal program, which funds the majority of nursing home care in the state, this year is receiving the largest rate increase ever for nursing homes, said Stan Rosenstein, assistant deputy director of medical services for the state health department.

As of Aug. 1, California increased nursing home Medi-Cal rates by an average of 11.7%. On top of that, it boosted Medi-Cal reimbursements allocated to the salaries of nurses, nursing assistants and other workers offering direct care. The state also increased money for wages, recruitment and training of in-home personal care aides who help homebound patients with essential activities.

But money alone doesn’t account for great care.

Only one of HOME’s six beds is allocated to a low-income recipient. The other five residents pay $2,500 a month, significantly less than the about $3,500 they would pay for traditional nursing home care. HOME relies on fees, two fund-raisers a year that bring in about $25,000, and the kindness of donor angels, including one who has provided some of the backyard trees.

Founder and director Linda Laisure, 53, a Texas-born gerontology specialist, pays senior staff, like Flores, more than $9 an hour but wishes she could come up with the $15 to $20 she thinks their work is worth.

For them, like her, money isn’t the primary goal; it’s the sense of community and dignity that HOME fosters among its workers and residents.

As 53-year-old Petra Brambila, who has logged 13 years with HOME, put it: “It’s more than family.”

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Resources for Alzheimer’s Caregivers

* The Alzheimer’s Assn. provides information, referrals and support services to patients and families as well as training for caregivers. For the association’s Los Angeles chapter, call the help line at (800) 660-1993 or go to https://www.alzla.org. For other chapters around the state and nation, call the national help line at (800) 272-3900 or go to https://www.alz.org.

* The Alzheimer’s Disease Education and Referral Center, part of the National Institute on Aging, provides medical and caregiving information on Alzheimer’s. Call (800) 438-4380 or go to https://www.alzheimers.org.

* The Family Caregiver Alliance, which offers Alzheimer’s training programs for families and health care workers, also has presentations on dementia and approaches to care. Call (415) 434-3388 or go to https://www.caregiver.org.

* The California Department of Aging administers services to elderly Californians, primarily through 33 Area Agencies on Aging that provide services by geographical area. The local agencies have Alzheimer’s Day Care Resource Centers that serve patients and offer respite care as well as training and support for families and professional caregivers. For the local affiliate in your area, dial (800) 510-2020.

* The California Assn. of Homes and Services for the Aging in Sacramento is an advocacy organization representing nonprofit long-term care facilities, and offering training and education to nursing staff. The organization can be reached at (916) 392-5111 or https://www.aging.org.