It is estimated that 8.9 million family caregivers provide assistance to someone 50 years of age and over with AD or a related dementia.1
Families provide personal care that is integral to helping disabled older adults remain in their homes.1,2
Family care is not without its costs, particularly in the context of Alzheimer’s disease. As the disabilities and care needs of the person with dementia increase over time, the accumulated financial, social, psychological, and physiological impacts of family caregiving also intensify.3-8
The perspective that tends to dominate much of the literature is that care by family members is solely provided to older adults living at home. When caregivers are followed over longer periods of time it becomes evident that family caregiving responsibilities do not end with institutionalization of the disabled relative. Instead, this key transition appears to impact the type and intensity of help provided.9-11
Unlike earlier studies that treated institutionalization as an ‘endpoint’ in family caregiving, recent research has emphasized the continued involvement of relatives in care and the effects of nursing home admission (NHA) on the stress and mental health of family members.9,12-14
Whether NHA actually leads to reduced depressive symptoms and burden for caregivers is an important clinical question that has yet to be definitively answered. One early descriptive study suggested that NHA provides relief to family caregivers and reduces stressors such as feelings of exhaustion and fatigue related to care provision (“role overload”), at least temporarily.15
More recent studies conclude that NHA results in guilt, anger, anxiety, and depression for dementia caregivers, although others suggest that NHA does little to influence the trajectories of stress or negative mental health prior to and after institutionalization.13,14 16-20
Additional descriptive research focused on the new challenges that institutionalization pose for families, such as the negative interactions between family caregivers and staff as control of care is shifted to the facility and the family member is left with an ambiguous care role.11,16,18
Parallel to descriptive analyses of dementia caregiving and institutionalization, a series of clinical efforts have sought to alleviate the psychological, emotional, and physiological distress that can occur as a function of intensive family care provision. Recent meta-analyses and multi-site, randomized controlled evaluations indicate that psychosocial interventions for caregivers such as skills training, education, therapeutic counseling, and information-based services are generally effective in producing clinically meaningful improvements in psychological well-being.21-26
Nevertheless, there is little research to document the effects of these interventions in easing the transition of NHA for family caregivers. The goal of the current study is to unite these two streams of research to determine whether the availability of long-term counseling and support reduces burden (the emotional, psychological, physical, and emotional “load” of care provision27
) and depressive symptomatology across the institutionalization transition.
The NYU Aging and Dementia Research Center (NYU-ADRC) has been conducting a pioneering randomized trial of a psychosocial intervention for spouse-caregivers of people with AD since 1987.28-34
Due to its prospective data collection strategy throughout the provision of dementia caregiving, the NYU Caregiver Intervention (NYUCI) is uniquely positioned to answer the research questions of interest in this study. Moreover, the randomized controlled design of the NYUCI offers clinical insights beyond those offered in descriptive research.
Based on the previously reported effects of the NYUCI in delaying institutionalization29-31
and the equivocal findings of prior research on the ramifications of NHA for family caregivers, we conducted analyses of the NYUCI to answer the following questions:
- Does the NYUCI reduce Alzheimer’s caregivers’ burden and depressive symptoms prior to and following NHA? and
- What are the long-term, post-NHA changes in burden and depressive symptoms for Alzheimer’s caregivers who do or do not receive the NYUCI?