Caring for the Caregivers: Family Interventions
and Alzheimer's Disease
by Arline Kaplan
Psychiatric Times September 1998 Vol. XV Issue 9
Caring for family caregivers of Alzheimer's disease patients can not only enhance the caregivers' lives, but may also postpone the patient's institutionalization by nearly one year, an expert in geropsychiatry reported recently.
At a symposium titled "Practical Approaches to the Treatment of Psychoses in the Elderly," Soo Borson, M.D., associate professor of psychiatry and behavioral sciences, and director of geropsychiatry services at the University of Washington in Seattle, described how controlled intervention trials in Alzheimer's disease (AD) demonstrated the positive effects of both brief and long-term caregiver support. The symposium was held at the American Psychiatric Association in Toronto and was supported by an unrestricted educational grant from Abbott Laboratories.
Borson discussed how working with people other than the patient can make a significant difference in the outcome of behavioral disturbances in dementia for AD patients.
Although the research in this area is sparse, she said, there are "some very good studies and more in the making." Borson described two controlled intervention trials of working with caregivers to improve behavioral disturbances and health services outcomes in patients with Alzheimer's disease.
"These two are a semi-structured, multimodal, long-term caregiver support program [Mittelman et al., 1996] and a brief caregiver training model, designed to help caregivers manage depression in AD patients [Teri et al., 1997]. [These programs are] equally applicable to other kinds of behavioral disturbances, provided they are reasonably mild," she said.
The goal of the New York University Spouse-Caregiver Intervention Study was to determine the long-term effectiveness of comprehensive support and counseling for spouse-caregivers and families in postponing or preventing nursing home placements of patients with Alzheimer's disease. All caregivers in the study were spouses who expressed the desire to keep patients at home as long as possible. Even the caregivers' "own poor physical health did not motivate them to place their spouses in nursing homes," the researchers said.
"This was a very well-done study in which there were three components of care that made a difference. It is a model some of you could adopt in your practices," Borson told attendees.
The treatment in the Mittelman et al. study consisted of structured counseling sessions for caregivers at the beginning of the treatment process, support groups and as-needed counseling. Within the first four months of the caregiver's enrollment in the study, six sessions of counseling were provided, two with the primary caregiver alone and four that included the rest of the family. The counseling sessions were task oriented, promoting communication among family members, teaching techniques for problem solving and management of troublesome patient behavior, and improving both emotional and instrumental support for the primary caregiver. Education about AD and resource information also were provided.
Primary caregivers were then asked to participate in a weekly support group in perpetuity, Borson said, and there was ongoing counseling provided at the request of the caregiver on an ad hoc basis by trained social work counselors.
"This program went on for a couple of years, and the net effect was to delay nursing home placement by a median number of 329 days in the actively treated group. That is close to a year's median difference," she said. "The control group, by the way, were given usual care in an Alzheimer's center type of program, which means they had knowledgeable caregivers who were very aware and alert to the problems that AD patients experience. Even in comparison to that usual care, this intervention had a dramatic effect on improving home-care retention."
In their study, Mittelman et al. concluded that a program of counseling and support can substantially increase the time spouse-caregivers are able to care for AD patients at home, "particularly during the early to middle stages of dementia when nursing home placement is generally least appropriate."
What were the critical elements that promoted the delay in nursing home placement? "Probably the following: the assistance to caregivers was multimodal; in addition, it was flexible. Caregivers were required to participate in structured assistance. Nonetheless, the content of that assistance would vary according to need," Borson said. "The main effect was that treatment enhanced the capacity of caregivers to sustain the caregiving relationship."
Other factors also played a role, according to Borson.
"Those families who had higher disposable income retained the patients at home longer. When caregivers became less depressed, which was a function of this intervention strategy, they were able to care for their patients longer. And finally, when caregivers were less distressed by patient behaviors and learned to cope with them better, those kinds of changes predicted longer retention at home."
A big counterintuitive finding of the study, according to Borson, was that "caregivers who were male cared for their wives longer at home than caregivers who were female."
Researchers suggested that the male caregivers in the study came from a generation in which men were more accustomed to maintaining an independent life outside the home.
"Our clinical impression was that male caregivers were less enmeshed in the caregiving role, less exhausted by it and, therefore, able to continue in it longer than female caregivers," they said.
Brief Caregiver Training
Other models of working with caregivers, Borson said, came from the work of geriatric psychologist Linda Teri, Ph.D.
"This is a controlled trial of treatment of depression in AD using two different models of care. The first was an intervention to enhance pleasant events for Alzheimer's disease patients, giving them opportunities to participate in activities that were more fun for them," Borson said. "The second was a cognitive behavior approach that taught caregivers how to manage problem behaviors in patients. The problem behaviors were predominantly associated with dysphoric mood and mild depression, so it has been reported as a study of the treatment of depression by caregivers. In fact, depression rarely occurs in isolation in AD; there is also agitation and sometimes psychotic features. In other words, mixed behavioral presentations are the norm.
"The controls in this case were usual care and wait-list controls who were not yet accepted into the treatment protocol. This was a nine-week, one-hour a week treatment model, very short-term. First of all, many kinds of symptoms of depression or [symptoms] associated with depression in AD responded to both modalities of treatment. These [symptoms] included agitation, dysphoria, suicidal thoughts, and thoughts of death," Borson said.
"The pleasant events enhancement and problem-solving therapies both produced clinical improvement in approximately 45% to 65% of treated patients. In contrast to that, only about 20% of the control patients got equivalently better."
While there were very significant benefits to the study, Borson said the results probably would not apply to many of the AD patients that psychiatrists see.
"These patients were mildly disturbed; these were patients who didn't need to be treated with pharmacotherapy, who were living at home and whose overall symptom rating scores were in the mild to moderate range, not the severely disturbed range that most of us would associate with a requirement for drug treatment," she said. "However, it is important to note that this study has a particular strength. Although it lasted only nine weeks as an intervention, the gains for patients and caregivers were maintained for at least six months, so this is a durable kind of intervention."
Psychosis and Caregiving Burden
In her presentation, Borson emphasized the relationship between caregiver burden and patient behaviors, using psychosis in particular as an example. She explained that when patients were accusatory, violent, delusional or exhibiting catastrophic reactions, 80% of their families reported excess burden in caregiving.
"Additionally, aggressive behavior is contagious within family settings; it may be contagious in other kinds of care settings as well, such as nursing homes. An aggressive patient begets an aggressive staff person; a depressed, anxious or angry caregiver begets an aggressive patient," she said. "Accusations and agitation in a patient create distance; depression and entrapment among caregivers and caregivers' daily hassles promote agitated patient behavior. All of these [conclusions] are supported by data [Rabins et al., 1982; Ryden, 1988; Pruchno and Resch, 1989a, b; Coyne et al., 1993; Aronson and Post, 1993]."
Looking at factors that promote agitation and aggression in elderly patients with psychosis, Borson cited regional brain disturbances; severe cognitive impairment; male gender; acute medical illness; threatening hallucinations or delusions; physical environments that are cold, noisy, dark or confusing; as well as personality traits (Reis et al., 1994) and poor quality of intimate relationships.
"When a patient has known premorbid aggressive personality traits and then becomes demented, development of aggressive syndromes is more common," she said, adding that when relationships have been poor between a patient and a family caregiver before dementia develops, aggressive behavior and difficulty with caregiving tends to become more of a problem.
In examining problems of caregiver-patient relationships, Borson described a unique role for psychiatrists. "First, we define what needs to be fixed. What are the elements in a problematic relationship that we can do something about? Next is something that we often ignore in the clinical practice of psychiatry: to determine what it is that the patient can learn. When we have a demented patient or someone with a severe learning impairment of any cause, we tend to assume that learning is not going to take place, so why bother? This is often a wrong assumption," she said.
Psychiatrists also need to teach caregivers to not take the patient's behavior personally, Borson noted.
"This is much easier said than done," Borson said. "It often requires formal psychotherapy and intervention with the caregiver. We can teach the caregiver to focus on the emotional meaning of the behavioral symptom. There is some literature that highlights this, particularly the work of Cohen-Mansfield and Deutsch  which focuses on the potential communicative value of agitated behavior in nursing home settings, but the same may be said for agitation in home care."
Caregivers also need to be taught how to monitor and manage patient behaviors.
"There is a nice little mnemonic which has been popularized by Teri as the ABCs of behavior. A is the antecedent, what comes before a behavior. B is the behavior and C is the consequence-what comes after the behavior and as a result of it. Using the ABC concept allows you to analyze particular problematic behaviors in a way that may suggest to you interventions that you can undertake," Borson said.
Often, caregivers themselves need to be treated as patients, she added. Generally, they need treatment for depression, chronic stress responses and anger.
"Caregivers for demented patients have been referred to as hidden patients. We need to bring them out of the closet, and consider that at least 50% of caregivers at home are depressed. Sometimes the rates are even higher, particularly if the Alzheimer's patient is also depressed. There are rates reported of concurrent depression in patients and caregivers that approximate 100%," she said.
In some situations, Borson said, psychiatrists may have to help families supplement caregiving or arrange for the replacement of the caregiver where relationships are unduly dysfunctional.
"We also need treatment to promote personal interests and activities of caregivers; in other words, to turn them temporarily away from the embeddedness of the caregiving situation," Borson said. "Socially, this is called respite care, but psychologically it is often unavailable to caregivers until we have worked with them individually or in groups to accept that caring for themselves is also caring for the patient."