Home care for dementia -- a system with problems

As the disease process worsens for those with Alzheimer's, loved ones often have to make a decision about how they will handle additional care needs. A common first step is to bring in a home health aide, although accepting outside help can be difficult for patients at first.

"It's a lot to ask someone to open up their door to strangers when they already feel vulnerable," said Karen Headley, 52, of Ronkonkoma who struggled to persuade her mother to let an aide come in several times a week.

The aides may work a few hours a week or become live-in caregivers. For many families, these aides become not only a crucial part of a loved one's care but also close, trusted friends. For these aides, taking care of others, and in some cases, particularly taking care of those with dementia, is thought of as a calling. "I love to take care of people and make them feel like themselves and know they're not alone," said health care worker Joan Parker, 52, of Queens.

For other families, trying to find and hold onto properly trained and motivated aides becomes an exercise in frustration. Caregivers speak of home health care workers who show up late, or not at all, who steal or use items and eat food in the house without asking.

"I've had things taken from me," said Ellen Smith, whose husband, Irwin, has Alzheimer's. "I've had people use things in my house, like my washer, dryer, without even asking. And you just don't know who's in your house with you. Every week there's different people coming in and out of here. It's very difficult."

In addition, finding aides who are knowledgeable of dementia and how to properly approach and engage patients is extremely rare, caregivers said. "I have asked the agency, do you have someone with experience, and they don't," said Smith. "They don't get training in taking care of Alzheimer's patients. Most have no experience at all."

Some caregivers also become frustrated with the high turnover in aides, something that leaves many patients confused by the parade of new faces that come through the door.

"As soon as he gets adjusted to one, wham! They call me up and tell me another one is coming," said Mary Williams, 66, of Elmont of the caregivers for her husband, Calvin, who has Alzheimer's. "And I tell them you can't keep doing this because it takes him a while to warm up and adjust to the person . . . But they all want more hours, and we can't get more hours."

Aides need a certain number of hours to qualify for health benefits, but many caregiversare limited by Medicaid in the number of aide hours they receive per week.

The job is also low-paying. Forbes Magazine's annual list of the 25 worst-paid jobs in America always includes home health care aides. This year, the profession ranked No. 13 on the list, with an average salary of $19,690, behind short order cooks, parking lot attendants, maids, gas station attendants and bartenders.

"It is one of hardest jobs anyone can have, and yet it is one of the lowest paid and least recognized," said Mary Ann Malack-Ragona, executive director and chief executive of the Long Island chapter of the Alzheimer's Association in Ronkonkoma. "We need to change that, there's no question about it."

Taryn Birkmire, executive director of Recco Home Care Service, Inc. and president of the Long Island chapter of the New York Association of Health CareProviders, a trade association, said she doesn't think there is a lack of dementia-care training in aides. "I think we're all doing the very best we can with the means we have to work with," she said.

Home health aide services are formed by a doctor writing an order and a nurse creating a care plan that tells the aide what to do each day, Birkmire said. Aides cannot do anything that is not specifically listed on the care plan.

At the end of each day, the aide reports the tasks that she did that day. If an aide notices a change with a patient's condition, the nurse often will consult with the physician and bring the family in to all discuss the next course of action, she said. If there are complaints about the aides, a nurse supervisor will work with the aide to bring them up to par, she said.

"I think it's really a team approach and how each agency addresses it in their policies and with their health-care team," Birkmire said. "We do everything possible to keep the patient home for as long as possible."

The state department of health has a standardized curriculum for training, Birkmire said, set at 75 hours, including 16 hours of supervised practical training, with eight of those hours required to be in a patient care setting. These guidelines are generalized and not specific to any one condition, such as dementia. But, Birkmire said, "Many agencies extend their training above and beyond what is required just to make sure their aides are trained properly."

Nancy Hendley a dementia-care trainer for the New York City chapter of the Alzheimer's Association, disagrees. 'These guys have no training," she said. "They have a three hour video that they watch one day. That's all that's required."

"But if you call an agency and ask if they have dementia training, they'll say yes," she said. "It's not the aides' fault that they don't have training because they don't get the training but the family thinks they should and do. So it's a very bad situation."

Hendley calls the current system "Draconian" and thinks proper dementia training should be mandated at the state level. "It's criminal to send people in when they don't have training," she said . "And family members get furious about it, and who do they get furious at? Them [the aides]. So then they get a bad reputation and family members have a bad reputation with them. It's a very poor system."

Hendley is doing her part to prepare workers in the field by teaching a six-week training course for professional caregivers at the Manhattan-based New York City chapter of the Alzheimer's Association.In a recent session, Hendley demonstrated how to help dementia patients sip from a glass of water. Rather than shoving the glass in the person's face and forcing them to drink - a move often met with resistance - Hendley shows the health care workers how to have the patient grip the glass so that the aide merely guides it, and the patient stays in control of the water.

Hendley has the workers act out both ways of doing it, having them experience for themselves the sensation of being fed water involuntarily and then being allowed to control it themselves.

"So much of this kind of work, people are just doing things to people," Hendley said. "It's not empowering for the person with the disease, it doesn't give them dignity and respect."

The exercises she does with the health aides aims to give patients the ability to function at their optimal level, she said.

The course is 50 hours total, with training taking place for eight hours, one day a week. Those who attend are motivated to make a difference, Hendley said. "The compassion and the love you see in here will make you cry," she said.

Home health aide Cyrina Murrey, 42 of Brooklyn said the methods she learned "could get you through a lot of tight spots."

Murrey said she wants to broaden her experience further by doing volunteer work with dementia patients. "I think this may be my calling in life," she said. "You have to like it to do well at it."

The unique characteristics of dementia require specialized training, Hendley said. It is a disease that looks very much like mental illness, she said, and it can present itself differently in each patient.

"You can be the best home-care worker in the world, but if you don't have the specific tools you need to deal with a person with Alzheimer's disease you are sunk," she said, "Because they do things that a cancer patient doesn't do, and they try your patience.And in some ways I think they're some of the most difficult people to take care of."

But, aside from a small stipend that the association pays the workers, even this kind of extensive training offers no financial or career advantages, she said. Home health care agencies hands are tied also, said Bob Callaghan, a spokesman for the Long Island chapter of Association of Health Care Providers.

"We're seeing severe cuts on the federal level with home-care reimbursement, and that's trickling down to the state level and eventually to the county level," said Callaghan. "So there's a lot of lip service being paid to home care, but on the other hand, where are the dollars to fund and support that home care?"

Malack-Ragona said she wants to get the state Department of Labor involved in reform efforts, to raise compensation for workers. On Long Island, most home health care workers' earnings are mandated by the living wage, which in Suffolk County is $10.69 an hour with health benefits and $12.17 an hour without health benefits. In Nassau County it is $11.50 an hour with benefits and $13.10 an hour without benefits.

Recently too, Callaghan said, the part of the workers' rate that was a trend factor - similar to a cost of living index - was eliminated because of budget cuts and a revenue tax as well as an MTA tax on employerswas added.

"The unfunded mandates keep coming along, but the reimbursement doesn't follow along which is what creates this squeeze," he said.

Adding to the financial strain, Birkmire said, is a reimbursement lag. When an agency submits a list of expenses, they are not reimbursed until two years later.

"There is no question in our mind that these aides do a tremendous amount of hard work and we'd like to recognize that, but we're limited because of the reimbursement issues that are attached to the industry," said Birkmire.

There are also retention issues, and the job is one that can create burnout. Hendley spends part of her training talking to the workers about stress and self-care. "These guys don't have support groups, there's no place for them to vent their feelings," she said.

Workers are in the trenches, she said, isolated in homes for long stretches performing emotionally and physically draining tasks.

"They work in peoples' homes, and sometimes people will say 'Do my dishes and clean the cat box and also take care of my mom with dementia,' " Hendley said. "And a lot of the time, they're willing to do that, they're very giving folks."

She said workers can call the association's 24 hour helpline for assistance.

Teepa Snow, a dementia-care trainer recognized around the country for her innovative approaches to dealing with dementia patients said professional caregivers need to learn new methods of caregiving to face the influx of patients expected in the coming years.

"We need people who develop skills, who become experts, who are excellent at this and know how to share it," she said. "We need longevity."

The Alzheimer's Association's 24=hour hotline is 800-272-3900

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys

Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more

Click here to search our resource guide for Alzheimer's groups, topics and Web sites

Click here for Alzheimer's A-Z: Answers to all your questions