Caring for the Caregiver

Background: As the nation’s population ages and the prevalence of chronic diseases, like dementia, increases, informal caregivers will play an increasingly important role in maintaining independence for the elderly. Informal caregivers provide most long-term care for the elderly in this country and save hundreds of billions of dollars in healthcare costs annually. However, most informal caregivers experience burden secondary to caregiving that adversely impacts their physical, social, and/or psychological health. Caregiver burden threatens caregiver health and contributes to institutionalization of care recipients. Since the program of all-inclusive care for the elderly (PACE) model of care delivery relies heavily on informal caregivers to maintain independent aging, understanding and meeting the needs of caregivers is essential to the sustainability and success of PACE programs.

Purpose: This evidence-based practice (EBP) project was a gap analysis that surveyed 156 caregivers at an urban PACE program in the Midwest to examine caregiver demographics, caregiver burden, caregiver interest in support services, and the relationship between these variables to guide the development of caregiver programs.

Methods: Caregiver Assessments were administered to 156 caregivers via telephone or in person. The assessment included caregiver demographics, interest in caregiver services, and the 12-item Zarit Burden Interview (ZBI-12) to assess caregiver burden. The ZBI-12 has good reliability and validity as indicated by a Cronbach’s alpha of 0.88 and a correlation with the full version ZBI scores of 0.95. Results were analyzed using descriptive statistics, the Pearson r correlation test, the Wilcoxon signed rank test, and the Mann-Whitney U test on SPSS version 25. This project was approved by the Arizona State University IRB.

Results/Outcomes: Of 171 eligible informal caregivers of program participants living outside of an institution, 156 completed the survey, 3 refused, and 12 were unreachable. Most informal caregivers surveyed were Caucasian (69.5%) females (66%), children of the care recipients (45.5%), caring for people with dementia (40.6%), with some college education (37.2%), who earned $10,000-$25,000 annually (38.7%), provided over 30 hours of care per week (55.8%), and averaged 61.4 years old (SD=7.7). The average ZBI-12 score was 12.15 (SD=9.04), indicating a moderate level of burden. The most common stressors indicated by caregivers were activities of daily living (ADL) assistance (63.5%) and the time commitment involved in caregiving (57.7%). Correlates to high burden score included: limited time, aggressive behavior, financial stress, grief, assistance with ADLs, wandering behavior, toileting assistance/incontinence, and lack of sleep. Respite care was identified by 42.9% of those surveyed as the most helpful resource provided by PACE. 55.1% and 50.6% of caregivers indicated an interest in educational sessions and support groups respectively, if these services were offered in the future.

Conclusion: Through the exploration of caregiver demographics, factors correlated to increased burden, and caregiver interest in support services, the results from this EBP project provide guidance to programs, particularly other PACE programs, seeking to proactively mitigate caregiver burden through support services. The results indicate that respite care, educational sessions, and support groups should be prioritized when developing informal caregiver support services.