Health Literacy Needs Related to Incontinence and Skin Damage Among Family and Friend Caregivers of Individuals With Dementia

PURPOSE: The purpose of this study was to describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with Alzheimer disease (AD) and develop supportive and educational materials that address these needs. DESIGN: Descriptive. SUBJECTS AND SETTINGS: The sample included 48 family/friend adult caregivers of individuals who had advanced dementia. Caregivers were spouses (44%), daughters (31%), or extended family members/friends (25%) recruited from community-based agencies, with a mean age of 64 +/- 14 years (mean +/- SD), and 75% were female. Nearly half (48%) had a racially or ethnically diverse background. METHODS: Focus groups, interviews, and written surveys were conducted to assess health literacy needs of AD caregivers related to incontinence and skin care; verbal responses were audiotaped, transcribed, and summarized. To address these needs, a set of educational and supportive materials was developed, whose content was directed by caregiver responses and supported by a literature review of current evidence and consultation with clinical and research experts. Study procedures were guided by an advisory committee of AD caregivers. RESULTS: Caregivers had numerous health literacy needs related to incontinence and skin care; areas of need were categorized into knowledge, skills, and attitudes. Caregivers expressed a need to validate the health literacy they possessed. Fourteen educational and supportive documents were developed to address these needs. CONCLUSION: Materials developed in this study are suitable to incorporate into interventions that support caregivers of persons with AD. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with health care providers, and improve health outcomes of care recipients.