Caregivers' Symptoms Often Overlooked, Untreated

Family members who provide care for a dying loved one are frequently exposed to traumatic events-such as witnessing the loved one choking or vomiting -and a little more than one-third of them meet criteria for major depressive disorder.

That's what researchers at Yale University found when evaluating a new survey instrument-the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale-designed to assess the fear and helplessness family caregivers experience as they witness a traumatic event in their loved one's dying.

In addition, 30.3 percent of the surveyed caregivers also met criteria for major depressive disorder using the Structured Clinical Interview for the DSM-IV, according to Holly Prigerson, Ph.D., lead author of the report, which appears in the May-June issue of the American Journal of Geriatric.

There was a high degree of correlation between scores on the SCARED survey and the risk for major depression, making the instrument clinically useful for identifying psychiatric disturbance in family caregivers.

"These are people who are highly treatable," Prigerson told Psychiatric News. "Yet no one is identifying, diagnosing, or treating them. There is a strong tendency to discount psychiatric disturbances when you can explain the cause. If you are a caregiver, you are understandably going to have panic attacks and suffer depression. But these are treatable psychiatric disorders. Why not identify and treat caregivers if a third of them are going to meet criteria for major depressive disorder?"

Prigerson is an associate professor of psychiatry, epidemiology, and public health at Yale University School of Medicine.

Prigerson and her colleagues administered the SCARED scale to 76 family members distressing caregiving experiences, including witnessing the following events or conditions in their loved one: Severe pain and discomfort; inability to eat or swallow; choking; vomiting; dehydration; sleeplessness, falling, collapsing, or passing out; and confusion or delirium.

Respondents were also asked whether they felt the patient had "had enough," and whether they had ever thought "the patient was dead when he or she was not dead." Respondents were asked to record how many times each had occurred in the previous month and to rate the degree to which the experience evoked fear and helplessness.

Each of the events listed in the SCARED scale is a common occurrence. The leastfrequently endorsed experience was the caregiver thinking that the patient had died before his or her actual death-yet even this was reported by 30.3 percent of the caregivers. The most commonly reported experience was witnessing the patient in severe pain or discomfort (80.3 percent), followed by observing the patient in a state of confusion or delirium (76.3 percent).

The total score on the SCARED scale and the frequency of witnessing events were significantly associated with increased odds of major depressive disorder and increased impairment in several quality-of-life areas. "The results strongly showed that those having these exposures had an increased risk of major depression," Prigerson said. "The and easy screen for very common things to which caregivers are going to be exposed."

Moreover, Prigerson believes that the 30 percent figure for major depression is probably conservative. She said a cross-sectional survey of psychiatric illness among family members in the community providing care to terminally ill patients-performed last year by the Yale Cancer Center and funded by the Soros Foundation-found the prevalence of depression to be about 50 percent.

Prigerson said her interest in the subject stems from her experience watching her father die of pancreatic cancer.

She recalled seeing him choking, vomiting, and struggling for breath. "A few times I thought he was dead," she said. "Those are traumatic experiences. We thought to develop an instrument that would describe some of these things people witness in loved ones and examine how much fear and helplessness those exposures evoke."

Prigerson believes that by identifying caregivers at risk for major depression, interventions can be designed using cognitive- behavioral therapy and education about what to expect in a dying patient and how to respond.

The study, "The Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale: A Measure for Assessing Caregiver Exposure to Distress in Terminal Care," is posted on the Web at <http://ajgp.psychiatryonline.org/cgi/content/full/11/3/309?>. ▪

American Journal of Geriatric Psychiatry 2003 11 309