August 30, 2004
Care partners who make the difficult decision to place a loved one with Alzheimer’s in a nursing home may be particularly prone to depression and anxiety, new research reports. Even though the move to a skilled nursing facility means that caregivers will receive additional day-to-day help in caring for loved ones with Alzheimer’s disease, the stress of making such a transition and coping with ongoing care needs may make it necessary that caregivers receive extra support during this difficult time.
“Caregivers who place their loved ones in an institution may continue to feel distressed by the suffering and decline of their loved ones, and often have to face new challenges, such as frequent trips to the long-term care facility, reduced control over the care provided to their relative, and new responsibilities such as coordinating and monitoring care,” says study leader Richard Schulz, Ph.D., professor of psychiatry and director of the Center for Social and Urban Research at the University of Pittsburgh School of Medicine.
Because of the likelihood of ongoing feelings of depression and anxiety among caregivers, the researchers note it is important that spouses and others who remain actively involved in caring for a loved one with Alzheimer’s receive adequate support and help from doctors and other health-care workers, as well as psychologists and social work professionals. This help includes preparation for and guidance through the placement process, appropriate medications and counseling for a caregiver’s depression and anxiety following the move to a nursing home, and recruitment of family and friends to provide ongoing support for the caregiver.
Depression, Anxiety Lingering Problems
The researchers studied more than 1,200 Alzheimer’s caregivers from six medical centers around the country, including husbands, wives and other family members who were caring for loved ones with Alzheimer’s at home. During the next year and a half, 180 of the men and women being cared for at home needed more extensive care provided in a nursing home or other long-term care facility.
Caregivers were given extensive tests to measure how depressed, stressed, and anxious they felt both before and after the move to a nursing home. The researchers found that many remained just as distressed after the move as before.
Husbands and wives caring for a spouse with Alzheimer’s were particularly prone to anxiety and depression, as compared with other relatives and family members. In addition, caregivers who visited the nursing home more frequently were more likely to suffer from mental distress than those who said they were less satisfied with the help they received from others.
Almost half of caregivers continue to visit regularly, often daily, after their loved ones are moved to a skilled nursing home. Caregivers also continue to provide help with many of the tasks required while their loved ones remained at home, such as feeding, grooming, managing money, shopping, and helping out with transportation. On top of this, caregivers must take on new tasks, such as navigating the facility, getting to know staff, and becoming an advocate for their loved one.
In addition, many caregivers have mixed feelings about the move in general. Many feel guilty about placing a family member in an institution, feeling they have broken a promise to a loved one or failed to live up to their spousal or family obligations. Long-term care also adds new financial burdens for the family. In addition, as those with Alzheimer’s continue to deteriorate both physically and mentally, many caregivers question whether the move was even a good decision in the first place regardless of how difficult or impractical it had been to continue caring for the loved one at home.
“This study shows that we need to help caregivers who place their relatives. We need to treat their emotional distress, educate them about the nature of long-term care facilities and their impact on patient functioning, engage them in end-of life planning, and prepare them for the eventual death of their loved one,” said Dr. Schulz.
Anyone caring for a loved one with Alzheimer’s does not need to go it alone. www.Alzinfo.org, offers extensive information on resources and support as well as information on continuing care. Enlisting ongoing help and support throughout the care-giving process can be critical. You do not have to be alone.
A new industry–Senior Move Management—has developed to assist individuals going through this process. Senior Move Managers are professionals who specialize in helping older adults and their families with the emotional and physical aspects of relocation. Many Senior Move Managers have backgrounds in gerontology, social work, health care, nursing and psychology. The National Association of Senior Move Managers (NASMM) has a web site that provides consumers with information on the industry, questions to ask when looking for a Senior Move Manager, and a referral map to locate Senior Move Managers in their community.
Richard Schulz, PhD, Steven H. Belle, PhD, Sara J. Czaja, PhD, et al: “Long-term Care Placement of Dementia Patients and Caregiver Health and Well-being.” Journal of the American Medical Association, August 25, 2004, Volume 292, Number 8, pages 961-967.