Barriers to communication with a healthcare provider and health literacy about incontinence among informal caregivers of individuals with dementia

PURPOSE: The purpose of this study was to examine barriers to communicating with healthcare professionals and health literacy about incontinence among different types of informal caregivers of individuals with Alzheimer disease (AD). DESIGN: Descriptive secondary analysis. SUBJECTS AND SETTING: The sample included 48 family/friend adult caregivers of individuals who had AD. Seventy-five percent were female; their mean age was 64 ± 14 years (mean ± SD). Caregivers were spouses (44%), daughters (31%), or extended family members/friends (25%). Nearly half (48%) of caregivers had a racially or ethnically diverse background; 58% of their care recipients had incontinence. METHODS: Data were collected via focus groups, interviews, and written surveys. Verbal responses were audiotaped, transcribed, and analyzed for themes by caregiver type using content analysis. RESULTS: Caregivers of persons with AD described role-related barriers to improving health literacy about incontinence and its management. Main themes of barriers emerged for each type of role that were emotive in nature for daughters, experiential for both spouse caregivers, system related for husbands, and relational (being perceived as an outsider) for extended family/friends. CONCLUSIONS: Nurse continence specialists have an important role in raising health literacy about incontinence and its management for informal caregivers of individual with AD. Results inform the development of interventions that are tailored to the type of caregiver as recommended by national health literacy initiatives with the aim of improving outcomes such as incontinence of care recipients.