Background/Aims: Incontinence and associated skin damage can occur in Alzheimer’s disease or dementia (AD), however few educational programs directly address these problems. Informational needs related to incontinence and skin care in dementia were assessed among informal (family/friend) caregivers and healthcare providers in order to develop educational materials.
Methods: Audiotaped focus groups or interviews were conducted with informal (family/friend) caregivers (goal n=56) and healthcare providers (goal n=10) to assess health literacy content (e.g., knowledge, skills), attitudes and preferences for format of materials. An informational and supportive intervention is currently being developed based on the results of this assessment, as well as review of current literature and recommendations by expert clinical consultants.
Results: A total of 48 caregivers and 11 healthcare providers participated in focus groups/interviews. Preferred format of materials for both caregivers and providers involved informational brochures or a FAQ sheets; very few preferred electronic materials. Based on needs assessment results, topics have been prioritized for development of caregiver educational materials: (1) Relationship between incontinence and AD (e.g., prevalence, reasons why incontinence occurs in AD, incontinence as a health problem and not a behavioral problem), (2) Managing incontinence (e.g., handling undressing/dressing and toileting, diet/fluid restrictions), (3) Preventing Skin Issues (e.g., skin damage descriptions, guide to absorbent and skin care products, step-by-step instructions for skin care), (4) Talking to a healthcare provider (e.g., when to discuss topic, terms to use), (5) Caring for the caregiver (e.g., importance of self-care, preventing isolation, sharing experiences with other caregivers), and (6) Questions to ask when considering assisted living or long-term care (e.g., how to assess facility’s management of incontinence and skin issues among persons with AD). These materials will be shared with healthcare provider subjects. Provider-specific educational materials will also include a short, intake survey that can be administered prior to appointment to prompt inquiry regarding incontinence, and a reference list of key articles related to incontinence and AD.
Conclusions: Supportive and informational educational materials are being developed regarding incontinence and skin care to meet the needs of caregivers and healthcare providers of persons with AD.