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’s disease 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, aged 64 (14) years (mean (SD)), and 75% 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 were 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 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 Alzheimer’s disease. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with healthcare providers, and improve health outcomes of care recipients.

Background/Aims: Primary Care Providers (PCPs) are seeing more complex patients who were previously managed by specialists. PCPs may not have the time or expertise to fully elicit or evaluate all patient complaints, or apply the detailed evidence required to manage these conditions. We describe provider experience with eCVD, a web-based cardiovascular disease (CVD) management system for use in primary care. eCVD incorporated a shared-decision making (SDM) tool linked to a clinical decision support (CDS) tool that, together, were designed to promote the development of preference-sensitive and evidence-based care plans. Methods: Prior to a primary care encounter, patients completed a behavioral risk factor questionnaire to calculate their CVD risk. Patients at elevated risk used the eCVD system, which included an SDM tool that informed patients of their CVD risk, educated them on the types and benefits of risk factorspecific treatment options, and allowed them to select their preferred treatment options. Via an alert embedded in the electronic health record (EHR), the provider could access a CDS tool displaying both tailored, guideline-based recommendations and the patient's chosen treatment preferences. We tracked use of the CDS and conducted structured interviews with providers to understand their experience with eCVD. Interview domains included: logistics/workflow, mode of presentation, content, patient preferences, and improving efficiency/effectiveness. Results: The CDS alert was presented for 118 patients; only 21.2% were opened by providers. Initial review of interview data showed that providers did not open the CDS alert due to time constraints or because it was indistinguishable from other EHR alerts. Providers stated that they believe discussing a patient's preferences for care is important but difficult to do with complex patients because of the time needed to: 1) review all relevant data; 2) determine additional data needs (e.g., labs); 3) determine the appropriate clinical course of action; and 4) educate the patient. Conclusions: Models of technology adoption highlight the importance of usefulness and usability of a tool like eCVD. Our data suggest that, while the SDM/CDS content was useful, usability issues remain. Detailed thematic analysis of how the tool was accessed and the functionality it provided will be completed in December 2010.

Background and Aims: Incontinence can occur in Alzheimer's disease or dementia (AD). Skin damage is frequently a physical complication. Few AD support programs directly address these problems. The purpose of this study is to assess and better meet the needs of informal caregivers and healthcare providers of persons with AD about issues of incontinence and perineal skin care. Methods: Audiotaped focus groups or interviews are being conducted with informal (family/friend) caregivers (goal n=56) and healthcare providers including physicians and nurse practitioners (NPs) (goal n=10) to determine needs for raising literacy and care capacity related to incontinence and skin damage. This assessment addresses health literacy content (e.g., knowledge, skills) as well as attitudes and preferred methods of receiving content. Results of this assessment, review of literature of current evidence and recommendations by expert clinical consultants will guide development of an informational and supportive intervention. Results: To date, 30 informal caregivers have participated in discussions (mean age 60; 75% female; 50% of care recipients are incontinent). A total of 11 healthcare providers participated in discussions (8 MDs, 2 NPs, 1 Pharmacist; mean age 53; 64% female; mean years of professional experience 23). Literacy needs of informal caregivers include prevalence and reasons why incontinence occurs in AD, when to discuss with healthcare provider and terms to use, types and photos of skin damage that can occur, indications for various absorbent and skin care products, and "step by step" instructions on ways to manage. Literacy needs of providers include evidenced-based recommendations for non-pharmacological management strategies, terms used by families and patients to refer to incontinence, referral or follow-up visit with specialist nurse, and utilization of provider (primary care, geriatrics) who has established relationship with patient. Preferred methods of learning/ dissemination for both caregivers and providers include informational brochure, FAQ sheet, and guide to skin care products. Few preferred computer-based materials. Conclusions: Family/friend caregivers and