For more than a decade, Cavanaugh, HP '75, and Jennifer Kinney of Bowling Green University in Ohio have carried out research on spousal care of patients with Alzheimer's disease. Their most recent publication, which will appear in the Journal of Gerontology, is a study of the accuracy of caregivers' recollections of their caregiving hassles.
Cavanaugh and Kinney carried out longitudinal studies of 97 couples over a six-month period. They videotaped the couples, observing them in their homes, and they interviewed and surveyed the caretakers. They followed up with monthly telephone calls and interviews at the conclusion of the study.
The researchers asked caregivers about their marital satisfaction and other relationship information, their feelings of personal control, their feelings about themselves, caregiving hassles, their appraisals of major problems and their coping strategies.
"A fatal disease with persons usually dying about 12 years after the diagnosis is made, Alzheimer's is a progressive form of dementia that strips a person of all cognitive functioning," Cavanaugh explains. "Our study was conducted on patients who were midway, about five years after they had been diagnosed. Their ages ranged from those in their 40s on up, but most Alzheimer's patients are in their 70s." The average length of marriage was 44 years.
"When a marriage is marginal, the caregiver of an Alzheimer's patient often feels bitter and trapped. Our research has shown that partners from marginal marriages also tend not to educate themselves about the disease or seek the outside help they need," he says.
"When the marriage has been good, caregivers usually want to care for the person they have loved; they feel they owe it to their wife or husband to help them. They learn about the disease and don't take personally the hostile outbursts, which are part of the behavior pattern," Cavanaugh explains.
"It's difficult to cope with an Alzheimer's patient," he says. "The person you have lived with for years doesn't know who you are. There are fits of violence and disruptive behavior. Patients can be depressed, angry and anxious, and they have a tendency to wander and must be watched. Outside friends don't know what to do or say and some drift away.
"We discovered, however, that religion helps many spouses cope with caring for Alzheimer's patients," he says.
Most insurance companies do not provide coverage for the care of Alzheimer's patients so spouses and other family members must assume the role of caregiver. "The families without financial resources are between a rock and a hard, place since adult day care also is expensive," Cavanaugh points out.
Although drugs are used and have some value, intervention techniques also can be helpful. However, these take time to develop, learn and follow and, unlike drugs, they are not covered by insurance. "For institutionalized patients, it is sometimes easier to give medication than to work on individual responses and needs," Cavanaugh says.
Montessori educational techniques, where learning tasks are adapted to the abilities of the individual child, have proven successful in some cases, he adds. In a nursing home in Ohio, these methods were used with an elderly woman with Alzheimer's, and were recorded on videotape.
"In the first part of the tape, the woman, sitting in her wheelchair, was completely apathetic. Then, she was taught by an activities director how to identify shapes and textures and do simple puzzles. After she had mastered these, a child from the employee day-care center joined her, and the woman started to teach the child what she had learned. She was interested, animated and regained her self-esteem helping the child-a total turnaround from the way she was at the beginning of the tape," Cavanaugh says.
In another instance, a woman who had emigrated from Russia several years before was violent, frustrated and rapidly deteriorating. "With the disease, you lose your second language, and it turned out the woman no longer understood or could speak English," Cavanaugh says. "A professor who taught Russian at a local college came to the nursing home and made phonetic signs for simple Russian phrases, such as 'How are you today?' The signs were hung above the woman's bed so the staff could read them. Nurses and aides took a crash course in useful terms and then could communicate with the woman,who ceased being afraid, responded positively and no longer required drugs.
"It is important that caregivers be given education on the disease itself. If caretakers understand the disease and the changes that come about, they are better able to cope," Cavanaugh says.
Cavanaugh's research reveals that memory impairment and disruptive behavior account for most problems caregivers experience.
"However, we discovered that, during the monthly calls, caretakers frequently had forgotten what they had said their major problems were the month before. In a clinical setting, physicians and other health-care practitioners should be aware that, although the caretaker's input is important,
it is sometimes not accurate and consistent," Cavanaugh says.
"Caring for a person with dementia can be extraordinarily stressful, and spouses and family members who are the caretakers have been described as the 'hidden victims' of Alzheimer's disease," he says.
-Sue Swyers Moncure