Purpose: To assess and better meet the needs of informal caregivers and healthcare providers of persons with Alzheimer’s disease or dementia (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 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. Health literacy content, attitudes and preferred methods of receiving information will be assessed. Results, along with evidence-based literature and expert consultant recommendations will guide development of an educational intervention.
Results: To date, 30 informal caregivers and 11 healthcare providers have participated in discussions. Literacy needs of caregivers include prevalence and reasons why incontinence occurs in AD, when to discuss with healthcare provider, terms to use, 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, referral or follow-up visit with specialist nurse, and utilization of provider with 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 skin damage and have identified preferred ways of addressing these needs.