CAREGIVER-RELATED FACTORS ASSOCIATED WITH THE DESIRE TO INSTITUTIONALIZE CARE RECIPIENTS WITH DEMENTIA

Abstract

Introduction Institutionalization of individuals with dementia within the first five years of diagnosis occurs at a rate of 10% per year. However, surveys show that most older adults prefer to age in place in the community. Research in the past two decades indicates numerous variables are associated with increased risk of institutionalization, including both sociodemographic factors (e.g., caregiver employment, financial resources, and older care recipient age), as well as psychosocial and care recipient factors (e.g., care recipient disability level and problem behaviors). Care recipient (CR) characteristics associated with greater risk for institutionalization include increased dependence in activities of daily living, severity of cognitive impairment, and frequency and severity of behavioral symptoms of dementia. Previously investigated caregiver (CG) characteristics, such as physical well-being and self-care behaviors, CG burden and social support, may also contribute to the risk of institutionalization. However, these identified CG factors have not yet been routinely assessed in clinical practice. Additionally, CGs are at a greater risk for poor health, depression, and use of psychotropic drugs and health services. Our aim was to examine the relationship between CG-related factors (e.g., depressive symptomatology, CG burden, perceived health, and social support) and the desire to institutionalize the CR among a real-world community sample of CGs of older adults with dementia. We hypothesized that specific CG domains, including greater perceived health and social support, would decrease the desire to institutionalize the CR. Methods The sample included 334 caregivers (CGs) of older (aged 65+), community-dwelling, low-income care recipients (CRs) prescribed a cholinesterase inhibitor or memantine who met criteria for dementia. CRs were identified from a sample of older adults receiving pharmaceutical assistance from the Pennsylvania Department of Aging's Pharmaceutical Assistance Contract for the Elderly (PACE) program. All eligible CGs who gave verbal consent to participate were enrolled in the Caregiver Resources, Education, and SupporT (CREST) program, a state-sponsored, University-delivered service, with assessment and support provided by behavioral health clinicians (nurses, social worker and psychologist) via telephone. Upon commencing the program, CGs completed a comprehensive assessment that captured sociodemographics and CR's clinical characteristics (including the Revised Memory and Behavior Problems Checklist (RMBPC) for dementia-related symptoms, frequency and severity), the REACH Risk Appraisal Measure (with sub-scales for CG depressive symptoms, social support, and perceived caregiving strain), the Zarit Burden Interview (for caregiving-related burden, perceived general health), and the Desire to Institutionalize Scale (e.g., ever considered placing CR in a nursing home, taken steps to place CR, etc.). Results CGs were on average 65.6?years old (SD=12.1) and primarily female (73.1%) and non-Hispanic White (79.6%). Over half (58.4%) of CGs were adult children of the CRs and providing full-time care (60.5%). Bivariate analyses revealed that greater desire to institutionalize was positively correlated with the following variables: CR's total ADL/IADL difficulty and frequency of dementia-related behavioral symptoms, younger CG age, caregiving burden, caregiving strain, less social support, and being a non-spousal CG. An adjusted regression model revealed that only greater ADL/IADL difficulty (p=0.02), caregiving strain (p=0.003), and social support (p=0.01) were uniquely and significantly associated with CGs’ desire to institutionalize, after controlling for all other variables. Conclusions Findings from this real-world, clinical, community-based sample identified three variables that independently predict increased CG desire to institutionalize the CR. The findings point to the potential value of systematically addressing CG-level factors and incorporating CG assessments into routine clinical care for patients with dementia. Routine CG assessment may increase opportunities for families, health care providers, health systems and community agencies to identify cases in which providing increased ADL/IADL support, reducing caregiver strain, or increasing social supports might lead to reductions in CGs' desire to institutionalize, and increase the chances for care recipients to age in place. This research was funded by: Commonwealth of Pennsylvania, Department of Aging, PACE Program, PACE/PACENET.