PS3-25: Raising Literacy and Capacity for Incontinence and Skin Care in Dementia: Needs Assessment of Family/Friend Caregivers and Healthcare Providers

Abstract

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 healthcare providers of individuals with AD have indicated health literacy needs related to incontinence and associated skin damage and have identified preferred ways of addressing these needs.