Here's how to reduce the caregiver's burden
Here's how to reduce the caregiver's burden
Provide tools for families to withstand stress
Most home health patients rely on the presence of a committed, competent caregiver — a spouse, a child, or other relative or friend — to remain in the home as long as possible. Perhaps nowhere is that relationship more important than in the case of a patient with Alzheimer’s disease or another form of dementia.
Informal caregivers are vital link in chain
Because the progression of dementia disorders robs patients of both the physical and mental capacity to care for themselves, informal caregivers are a vital link in the chain of care. Caring for someone who may not understand or appreciate the care can be, quite literally, a thankless task, says Peggy McFarland, PhD, LSW, assistant professor of social work at Elizabethtown (PA) College, and geriatric case manager with Senior Management Services, in Camp Hill, PA.
"In a normal caregiving situation, the person who’s getting the care can express their thanks or give some indication that they appreciate what they’re doing," McFarland says. "Can you imagine helping someone so many hours a day, and not even being sure that someone recognizes that you’re their daughter or you’re their wife?"
As home health agencies provide the care for dementia patients, they can also provide the education and moral support that keeps caregivers going, allowing the patient to stay in the home as long as possible.
Reducing the burden for caregivers while hewing to the limitations of Medicare funding means agencies need to be as efficient as possible about teaching caregivers and providing them with support systems, says Leslie Neal, PhD, RN, CRRN, assistant professor of nursing at Marymount University in Arlington, VA. Neal has worked in home health nursing for 10 years and has done research on the subject of caregivers of dementia patients.
Neal says that in the short time that a nurse may be available to the caregiver, he or she can provide strategies for handling the special challenges of dementia and investigate resources for respite care or other support.
Make an assessment
The process usually begins with the initial assessment. Although Neal says there are limits to the assessment that can be done of a caregiver who isn’t a patient, there are areas that nurses can ask about to pinpoint potential problems:
• Sleep. Dementia patients often get up at night and wander, keeping their caregivers up, as well. Over time, this can be debilitating to a caregiver who stays awake even when the patient isn’t moving around, in fear of what will happen if he or she falls asleep. Finding respite care during the day to allow a caregiver to sleep can help address that problem.
• Physical strength. As Alzheimer’s disease progresses, the patient becomes more and more sedentary, requiring lifting and turning abilities on the part of the caregiver. Incontinence adds to the problem, necessitating moving the patient to the bathroom, or in later stages, changing diapers.
• Caregiver health problems. Marla Lahat, MSW, executive director of Homecare Partners, a Washington, DC, nonprofit agency that provides supportive care to families, says she often finds caregivers who complain of back aches, headaches, high blood pressure, or nutritional problems. All should be considered when determining how well the patient can be cared for in the home.
McFarland says that it is vital that staff caring for the patient and dealing with the caregiver have thorough training in the special challenges of dementia care.
"It’s very obvious who is trained and who isn’t," she says. "A lot of times, it’s the home health staff who have to educate the caregiver and give them thorough modeling strategies on how to communicate with the patient."
Nurses or aides can show the caregiver how they respond to repetitive questions or other annoying behavior.
Staff can employ strategies to explain or minimize difficult behavior (see story, p. 59). Lahat says an outsider may provide a new perspective on behavior that drives the caregiver crazy.
"There are some behavioral problems that are really more annoying than they are problematic," she says. "Somebody who has repetitive behavior, such as wanting to sweep the floor all the time, isn’t hurting anybody. Someone from the outside can come in and say, This is not going to be a dangerous problem. If you can just tolerate it for a little bit, you can make life easier for everybody.’"
Her agency has compiled a booklet explaining how diseases such as Alzheimer’s progress and giving coping tips, as well as providing outside resources. The booklet is designed for easy reference to specific problems and is written so that less educated caregivers can understand it.
Neal says one of the most important roles of home health staff is to gently but honestly explain what the future holds for the patient and caregiver.
"I think it’s important early on to explain to them what the disease is all about, what we know about it, and what is most likely to happen," she says. "That’s hard to do, especially with people who have not heard a lot about Alzheimer’s and are not familiar with it. But you explain that at the very least, before you would be out of the picture, you’re going to try to set up support systems and community resources.
"On one hand, you’re giving them the bad news. But on the other hand, you’re telling them, I’m going to try to be with you for a little while and we’ll come up with a plan together.’"
Dementia prompts safety concerns
One important aspect of keeping a dementia patient at home is ensuring the safety of both the patient and others living in the home.
The most obvious problem is the tendency of patients to wander away and become lost. Staff can help caregivers notify people who might be likely to come across the patient — neighbors, police and fire departments — by providing a description or photo and contact information. Neal says there are devices that can help keep track of a patient without use of restraints. But in many cases, she says, constant vigilance is the answer.
"What some people do, who have the money to do it, is they get people to stay in the home at night — a professional or nonprofessional person who basically watches the person at night and keeps the person safe so the caregiver can at least sleep," she says.
Home health staff can help the caregiver "Alzheimer’s-proof" the home, beginning with an obvious danger, the stove. Patients can start fires by trying to cook something or at the very least ruin cookware by letting the contents burn. In extreme cases, caregivers may have to disconnect the stove entirely, relying on a microwave for cooking, Neal says.
Even that’s not foolproof. "You can get to a certain point where the patient is not aware that the food’s going to be too hot to touch," she notes.
Other safety precautions include locking up cleaning fluids, storing away firearms or other weapons, or even less obvious measures, such as putting away pet food dishes to keep patients from eating out of them.
Smoking is always a hazard and if oxygen is kept in the home for other medical purposes, care must be taken to avoid possible fire. As in any other home, smoke detectors need to be in place and functioning, Neal says.
Establishing support systems
One of the most troublesome aspects of caregiving in these cases is the lack of relief — the 24/7 burden that comes from knowing there’s no one else to provide care if the caregiver isn’t there.
Just through their presence, nurses and aides can alleviate some of that burden and should make an effort to help caregivers take the fullest advantage of it.
McFarland says that even caregivers who can afford to have other help may feel like they need permission to use it.
"They may not feel like it’s OK for them to take an afternoon off or bring a private duty home health aide for a day for them to go shopping or for a man to go play golf or whatever," she says. "It almost takes an outside person to say, I think it would be good for you to do this.’"
Neal says home health agencies can help caregivers navigate the complex web of what supplemental help is available, depending on where the patient lives and what the family’s financial resources are. Options include day-care facilities that simply provide supervision so the patient doesn’t wander off and more intensive programs that provide recreational activities.
"The dilemma of course is that if you put somebody with Alzheimer’s or dementia into a day-care facility, if there’s any professional nursing staff there, then home health can’t continue to see them, because it’s like double-dipping," Neal says. "Though we try to recommend it to caregivers, they have to understand that they lose that opportunity to have any skilled care in the home."
She says medical social workers are a vital resource in finding options for caregivers.
Lahat says that in many communities there are agencies such as her own that don’t provide medical care but offer home health aide services to assist in activities of daily living. Clients’ fees are on a sliding scale based upon their income. Funding for the service comes from the local Alzheimer’s Association, the DC Office on Aging, and other organizations.
And home health staff shouldn’t overlook less formal possibilities for respite care — family members, friends, church members, and others.
"You should encourage them to really think through who else in their social network can help," McFarland says. "Sometimes, other family members would help if they only knew what to do.
"I try to have caregivers come up with very specific things so that if someone says, Is there something I can do?’ they can say, Yes, it would be helpful if you could bring a meal over on Tuesday, or run to the drugstore and pick up my medication for me.’"
McFarland says that even family members who live at a distance can help by contributing money for respite care or by calling the patient to talk to him or her regularly.
Knowing when to let go
The ability of an individual caregiver to care for a dementia patient varies dramatically, based on a number of factors, including the caregiver’s health, resources, and the extent of the patient’s difficult behavior.
"It’s always amazing to me, the families that can provide this care 24 hours a day for 10 or 15 years and they manage to cope effectively, and you have other families who within a week or two or six months just can’t handle it anymore," McFarland says.
Often, say McFarland and Neal, incontinence tends to be the trigger that causes caregivers to look for alternatives to home care. Neal says it’s not just the hassle and mess of changing diapers that wears down caregivers.
"While they might be able to handle putting a diaper on someone for urinary incontinence, when a person with Alzheimer’s starts pulling off the diaper and urinating or defecating in other areas other than the bathroom, that is typically the last straw," Neal says.
In other cases, the physical strains of care — backaches from lifting and moving a patient, high blood pressure, the debilitating effects of lack of sleep — can compromise a caregiver’s health.
Lahat says the financial burdens of care may make a nursing home, where a patient may be eligible for Medicaid or other financial assistance, a better option.
Although the final decision to end home care is the family’s, home health staff can make the decision easier, by letting family members know that it’s OK to consider alternatives to home care.
Lahat says staff should be alert to signs that the stress might be too much for the caregiver, including health problems, continual crying, or depression.
Neal says the caregiver may take some convincing to consider other options.
"But I think that’s a professional’s obligation, to very gently but honestly say to the caregiver, This is not good for you.’
"You ask her to think about if her husband were back the way he used to be — would he want her to be losing her health and being miserable? Instead, maybe she could put him in a place where she could visit him and he could get good care and still take care of herself."
Neal notes that it’s not just family caregivers who need support as they care for dementia patients.
Nurses and aides can feel similar stress from dealing with a variety of patients who exhibit inappropriate behavior and whose conditions never improve.
Educate your staff
Agencies can support them by providing proper education in coping strategies and by listening to staff’s concerns.
Neal says she’s talked with many aides who provide intimate care for dementia patients.
"They’re bathing the patient, they’re dressing them," she says. "It gets very hard sometimes. Patients become violent, they become sexually inappropriate. The aide understands that the patient has no control over this and wants to be supportive. But sometimes if they’re inexperienced, they don’t know how to handle those situations and so they do need some education as to how to respond to a patient when they’re behaving that way."
Strategies such as distracting the patient from the problem at hand or playing calming music may be helpful. But she says staff also need to know how to protect themselves and need support.
"They’re stressful kinds of patients to care for," she says. "It’s frustrating because you don’t feel like you can do very much for them or for the caregiver."
• Peggy McFarland, Assistant Professor of Social Work, Elizabethtown (PA) College, and Geriatric Care Manager, Senior Management Services, 3314 Market St., Suite 302, Camp Hill, PA 17011. Telephone: (717) 737-7850. Fax: (717) 737-8032. E-mail: [email protected].
• Marla Lahat, Executive Director, Homecare Partners, 1234 Massachusetts Ave. N.W., Suite C-1002, Washington, DC 20005. Telephone: (202) 726-8870. Fax: (202) 638-3169. E-mail: [email protected].
• Leslie J. Neal, Assistant Professor of Nursing, Mary-mount University, 2807 N. Glebe Road, Arlington, VA 22207. Telephone: (703) 284-1589. Fax: (703) 284-3819. E-mail: [email protected].
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