TUESDAY, Aug. 24, 2004 (HealthDayNews) -- Caregivers who place a relative with dementia in a long-term care facility experience significant anxiety and depression afterward, and their use of tranquilizers to relieve anxiety increases, a new study finds.
Nearly half of caregivers in the study were at risk for clinical depression after institutionalizing their loved one. The transition was particularly tough for spouses, almost half of whom visited daily and continued to provide help with the patient's physical care during visits.
It shows that "caregiving doesn't end and that, more importantly, the distress associated with caregiving doesn't abate as a result of placement," said lead author Richard Schulz, a professor of psychiatry and director of the Center for Social and Urban Research at the University of Pittsburgh.
"This is very distressing, there's no question about it, but it's not surprising," added Kathleen O'Brien, a senior vice president with the Alzheimer's Association, which assists caregivers going through the upheaval of placing a loved one in long-term care. "It's our mission to help alleviate some of these stresses and strains."
The new findings, detailed in the Aug. 25 issue of the Journal of the American Medical Association, stand in contrast with earlier but related findings from the same researchers. Schulz and his colleagues reported last year that dementia caregivers tend to feel a great deal of distress in the year before a patient dies, but experience relief when the person passes away.
"They very quickly became less depressed, less anxious," he said.
But that wasn't the conclusion of the new research, which focused on what happens to family caregivers after institutionalizing a loved one.
One of the surprising findings: "The more you stay in contact with your relative, the worse off you are," Schulz said. That may reflect the caregiver's attachment to their family member and their strong sense of obligation to that person.
"For others, it might be out of sight, out of mind," he added.
The study points to a glaring need to support the nation's family caregivers, a group whose membership continues to swell as the population ages and the incidence of dementia grows.
An estimated 4.5 million Americans have Alzheimer's disease, the most common cause of dementia in people over 65. It can be a particularly stressful condition for caregivers struggling to cope with their family member's behavioral changes.
Schulz's sample included 1,222 pairs of caregivers and patients from six cities across the United States. A total of 180 patients were placed in long-term care facilities during the 18-month follow-up period. More than half of the caregivers were spouses; a large majority of the non-spouse caregivers were children of the people under care.
Caregivers with higher depression scores after placing their loved one in long-term care tended to be spouses, those who visited more frequently, and those who were more dissatisfied with the help they were receiving from other people, including other family members.
"The levels of distress that we're seeing are high enough to warrant intervention," Schulz said. "We ought to be doing something to directly treat the depression and anxiety."
Schulz isn't aware of any systemic efforts to reach out to caregivers who are going through the transition from home care to institutionalization. That gap represents a significant opportunity to improve caregivers' well being, he said.
"We may be able to intervene directly with the caregiver and achieve some significant positive outcomes," Shultz said.
Caregivers at risk should be given help to prepare for the transition. They need to be educated about what their ongoing role should be in the care of their relative, and they should be encouraged to seek medical treatment and counseling for depression, he said.
The Alzheimer's Association's O'Brien said her group tries to close the gap by spreading the word about its services. Caregivers can call the association's 24-hour "help line" at 800-272-3900 for information, referrals and in-depth counseling.
"We're also working with physicians so that they understand the services that we have can benefit their patients and can help save them time and help link them with local resources," she said.
More information
The Family Caregiver Alliance's National Center on Caregiving has more on caregiving and depression.
