For family members caring for a relative with dementia in the community, the emotional burden of nursing home placement may be greater than the death! If this is actually true (and it is), might that help explain the burdensome and disruptive conflicts that frequently arise between nursing facilities and family members?
A five-year study examining the effect of long term care placement on 180 community-dwelling dementia caregivers provides us with some astonishing findings (Schulz et al., 2004). Following placement of their relatives, family caregivers were assessed both before and after their relative was placed in a long-term care facility to determine the impact of this transition on the caregivers.
Caregiving family members remain highly involved with their relatives following admission to a long-term care facility. Following placement, about half of spousal caregivers visit daily and an additional 45% reported at least weekly visits. Among non-spousal family caregivers, a quarter visit daily and an additional two-thirds report weekly visits. In fact, the majority of caregivers visit their relatives on a regular basis and perform tasks similar to those carried out when the care recipient was living at home, such as managing money, arranging medical care and transportation, and providing social support. More than 50% of both spousal and non-spousal caregivers report participating in the physical care of the resident.
Persistent anxiety
Despite 80%-90% of the family caregivers reporting adequate satisfaction with the care in the placement facility, their depression and anxiety levels, which were already high as a community caregiver, did not improve following placement. In fact, the use of anti-anxiety medications among family members actually increased significantly from 14.6% to 19% following placement, and nearly half of the family members were at risk for clinical depression following placement of their relative. This high level of emotional distress is even more surprising given that families reported significant improvement in their own leisure-time activities and their perception of increased amount of help compared to prior to placement.
In addition to visiting and participating in care following placement, family caregivers take on new tasks such as interacting with administration and staff of the facility as the advocate for their relatives/residents. Feelings of guilt complicate families’ emotional responses to the challenges that occur. As the residents continue their decline towards greater frailty or dementia as a result of underlying disease processes, families often fault the facilities. Many of these challenges are predictable to the professional caregivers, such as progression of dementia and continued risk of falls.
However, families’ expectations are often unrealistic if they do not have a comprehensive understanding of the geriatric syndromes that have been at work and which had led to the nursing home placement. Family members also may have unrealistic expectations of the intensity of one-on-one care that can be provided by the facility staff. This can result in anger and resentment, sometimes leading to lawsuits, if expectations of care are beyond the reasonable capabilities of the nursing home.
Dealing with the death of a family member
What happens to the family if the care recipient dies prior to nursing home placement? Most families caring for an elder with dementia in the community who are then bereaved experience a dramatic spike in depression immediately following the death (Schulz et al., 2003). Following the third month, the severity of depression is less than it was prior to the death. Emotional comfort continues to improve and was sustained for 18 months. Of course, there are exceptions to this pattern if complicated bereavement or bereavement-related depression emerges. Almost 75% of the family members reported that death was a relief to them, and 90% believed it was a relief for the patient.
Caregiver distress following placement
Family caregivers continue to experience the high levels of depression and anxiety that they were accustomed to while serving as the community-based family caregiver of an Alzheimer’s resident following placement. This distress was present despite favorable impressions of the care their family member was receiving and an improvement in their own social life.
Nursing homes do not typically promote family education. A survey of 143 facilities in southern Michigan reported only 25% of facilities encouraged family members to attend classes to learn about chronic illness, and only 33% of the facilities encouraged families to “attend family group to help solve nursing home problems.” On the other hand, 75% of facilities reported involving families in medical decisions. (Friedemann, Montgomery, Maiberger, & Smith, 1997) Therefore, it appears that while families participate in medical decision making, facilities do little to enhance their knowledge.
Given these research findings, it is not surprising that highly stressed and poorly informed family members react emotionally, and at times, disproportionately, to the challenges encountered with long-term care placement. In addition to the time and effort expended by long-term care facilities to address the complaints, lawsuits are not uncommon.
Research on helping families
We have obtained funding from the National Institute of Nursing Research of the NIH (R. Schulz, PI) to find out how to best help families during this transition period. Using interactive, Web-based videos developed by Fox Learning Systems, Inc. (www.foxlearningsystems.com) (Rosen et al., 2003) and skills training in mood management, this research program provides family members with the knowledge and skills needed to cope with this difficult transition. The intervention is presented to them privately by a social worker with expertise in eldercare. Six to eight educational sessions are conducted with the family members at a time and place convenient for them.
The impact of these interventions will be assessed with caregivers at six-months intervals and compared to caregivers in similar transitions who are given materials to read on their own. We are one year into this five-year study and do not have any data analyzed yet, but families are extremely receptive and responsive.
Nursing home administrators, nurses, and social workers must understand the intense level of stress experienced by families at the time of placement. Knowledge of the long-term care systems and understanding the nature of the common geriatric syndromes can aid families during this difficult period. Getting this information to families can be a challenge. But there is some good news regarding excellent educational resources for family members. Recently, The Rite Aid Drug Store Chain has launched a national caregiving campaign using videos supplied by Fox Learning Systems. Facilities can use the Rite Aid Giving Care For Parents site at www.riteaid.com as a great educational tool in learning more about clinical, legal and financial concerns. The educational videos are free to the public.
Reference List
Friedemann, M. L., Montgomery, R. J., Maiberger, B., & Smith, A. A. (1997). Family involvement in the nursing home: family-oriented practices and staff-family relationships. Res Nurs Health, 20, 527-537.
Rosen, J., Mittal, V., Mulsant, B. H., Degenholtz, H., Castle, N., & Fox, D. (2003). Educating the Families of Nursing Home Residents: A Pilot Study Using a Computer-based System. Journal of the American Medical Directors Association, 4, 128-134.
Schulz, R., Belle, S. H., Czaja, S. J., McGinnis, K. A., Stevens, A., & Zhang, S. (2004). Long-term care placement of dementia patients and caregiver health and well-being. Journal of the American Medical Association, 292, 961-967.
Schulz, R., Mendelsohn, A. B., Haley, W. E., Mahoney, D., Allen, R. S., Zhang, S. et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N.Engl.J.Med., 349, 1936-1942.
Jules Rosen, M.D., is a professor in the Department of Psychiatryand the Katz Graduate School of Business at the University ofPittsburgh Medical Center. He also is the chief of geriatric medicalservices at the University of Pittsburgh School of Medicine.
