Alzheimer's four domains of care
Hospital-affiliated home care agencies could be an essential part of a multidisciplinary team that treats Alzheimer's patients, experts say. Home health staff may assist a hospital Alzheimer's team in all four domains of care for these patients, providing a continuum of care that ideally will reduce the patients' hospitalizations. The home health component also helps families cope emotionally and physically with the demands of caring for these individuals.
"Our job is to visit the home and see what kind of support the patient has and to make sure everyone is working together," says Karen Dick, RNC, PhD, director of Beth Israel Deaconess Medical Center Home Care in Boston.
Health care providers need to understand that Alzheimer's disease patients need more care than one physician can provide, says Juergen H. Bludau, MD, medical director of Morse Geriatric Center in West Palm Beach, FL.
Bludau says Alzheimer's disease patients need these four different domains of care:
1. Medical treatment.
The team provides some of the patient's medical care, including treatment of any inter-current illnesses, regular health maintenance exams, and assessment of visual and hearing deficits, which may exacerbate behavioral issues.
"We follow patients in the acute and subacute settings," Bludau says. Home care also is involved. "The most important people are the visiting nurses," he notes. "If a person is just not eating right and the visiting nurse ignores that, then that could be the sign of an underlying pneumonia or urinary tract infection [UTI]."
It's up to the home care nurse to tell the Alzheimer's team that something seems to be wrong, and perhaps they could see the patient. "It could be the person is tired or weaker and is just not herself, and this could be a simple viral flu or UTI," Bludau adds. "Diseases present themselves differently in elderly people who have cognitive impairment."
2. Activities of daily living.
The team focuses on monitoring the patient's activities of daily living and teaching the patient how to develop memory strategies. And the team teaches the family how to deal with stressful situations.
"By the time the families arrive in the office, they're frantic and worried," says Kathy Lyman, RNC, GNP, a geriatric nurse practitioner for Beth Israel Deaconess Medical Care Center. Lyman provides case management for Alzheimer's cases. "It's sort of like when patients are discharged from the hospital; they are too anxious and don't hear everything that's being said," she explains.
Observing potential problems
The patient also may be referred to home care so nurses or physical therapists can assess the home for safety and teach the family how to help the patient avoid accidents. When the home care physical therapist visits the patient's home, the therapist might observe some undiagnosed problems that need to be reported to the physician, Dick says. "We might say, 'This person could benefit from six months of therapy to improve his gait.'"
Or the home care nurse might be asked to observe the patient after a new medication has been prescribed. Often, physicians prescribe chemical restraints for Alzheimer's patients to control their restlessness and wandering. The home care nurse may talk to the family about the medications and make sure there is someone to cue the patient to take the pills.
3. Psychosocial issues.
Then, the team addresses the psychosocial, legal, and ethical issues involved in care of Alzheimer's patients. For example, team members might urge the family to think about placement options once the patient reaches advanced stages of the disease.
"The secret to handling Alzheimer's patients is to have the appropriate caregiving style and caregiving environment," Bludau says. "Since you can't change the disease, you change the environment and caregiving style to suit these clients."
Sometimes the team will encourage caregivers to give up some of their control over the patient's life, Lyman says. "This might be convincing a wife to agree to send her husband to day care in the mornings," she says.
Ultimately, the team may have to firmly tell the family that the patient needs to be institutionalized, and this psychosocial issue could be one of the toughest. "We try to help families understand that this doesn't absolve them of their responsibility for caregiving, and that placement isn't the death knell they often think it is," Lyman says.
The home care team, which also includes a psychiatrist and psychiatric nurse, meets bi-monthly to review patient cases, Dick says. If the family is concerned about the patient's unstable behavior, then the psychiatric nurse might visit the family to help them deal with the problems. Also the home care staff will try to assess what kind of support systems and community resources would help the patients and family, she adds.
4. Family education.
Finally, the team educates the family about medications and side effects, disease progression, and signs and symptoms of other illnesses the patient might have. Family members also are told how to manage the patient's difficult behaviors.
The Alzheimer's team teaches families how to change patients' behaviors by redirecting their attention, Bludau says. The idea is to bring on positive emotions in the Alzheimer's disease patient. Many experts now believe that trying to reorient the patient does not work. So instead, the caregiver needs to accept the patient's reality and try to direct their attention to something else. This is called habilitation, he explains.
For example, suppose an Alzheimer's patient wants to leave the house in the middle of the night. It doesn't help for a family member to say, "No. Are you crazy?" or "This is ridiculous!" The patient will only become angry or upset and continue to insist on leaving the home.
What will work, however, is for the family member to say, "Let's rest for a moment, then we can do whatever you wish," Bludau suggests. "Then, by the time you sit down and talk with them, they forget they wanted to leave the house."
Lyman often tells family members that the Alzheimer's patient's bad behavior is not the patient's fault. "They're not to be held accountable for their behavior changes that become manifest with anger, mood changes, disinhibition, or anything that is so troublesome for the family," she says. "We try to help the family understand that this is an illness and not willful on the patient's part."
When family members reach a crisis point or have questions about the patient's behavior, they may call the team for help. Lyman often speaks with families over the telephone, and occasionally she'll visit their homes. Home care staff will reinforce the education, showing families how to handle the patient's feeding, bathing, dressing, mobility, medications, and safety issues.
So far, the hospital and home care agency have not collected any statistics to show if the multidisciplinary team approach and continuum of care have had a positive impact on patient outcomes. But anecdotal evidence suggests it has, Dick says, and certainly the clients are satisfied.
"We call and ask if they're satisfied, and generally they're very positive and appreciative of the care that's provided," she says.
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