Raising Literacy and Capacity for Incontinence and Skin Care in Dementia

描述（由申请人提供）：随着阿尔茨海默病或痴呆（AD）的进展，发生膀胱和/或肠道控制丧失（即尿失禁）。皮肤损伤，以会阴皮炎和压疮的形式，是尿失禁最常见的身体后果，并增加护理需求。本研究旨在更好地了解来自不同种族和民族背景的非正式护理人员和照顾AD患者的医疗保健提供者在失禁和皮肤护理方面的未满足需求。近1000万美国人为阿尔茨海默病患者提供非正式护理，32%的人为尿失禁和/或大便失禁提供帮助。然而，人们不愿意告知他们的医疗保健提供者关于尿失禁，提供者很少询问它。错失了治疗咨询的机会。虽然尴尬和社会耻辱可能在阻止讨论这些问题方面发挥了作用，但可能还有其他原因。护理人员对尿失禁和相关皮肤损伤的低健康素养可能是一个障碍。医疗保健提供者对各种治疗策略的了解可能有限。阿尔茨海默病患者的非正式照护者的幸福感受到多方面的压力，尿失禁增加了照护负担；与如厕和清洁有关的角色变化和身体需求是主要的压力源。失禁是阿尔茨海默病患者入住养老院（NH）的主要原因之一。尽管减少了他们的直接照顾义务，照顾者感到焦虑和内疚后NH安置和发展新的担忧照顾的充分性。NHs中超过一半的人失禁，需要如厕帮助，6-10%的人有失禁相关的皮肤损伤。因此，有必要加强护理人员和医疗保健提供者的能力，为失禁和有皮肤损伤风险的AD患者提供最佳护理。在这项研究中，我们将解决这两方面的护理差距。如果没有早期识别和适当的措施，皮肤损伤会恶化，变得疼痛、痛苦、感染和昂贵。肤色较深的人可能因缺乏对皮肤损伤的识别而面临更高的风险，从而导致更严重的损伤。心理教育干预改善了照顾的一些不利影响，并推迟了被照顾者的制度化。在本研究中，分别使用焦点小组和护理人员和医疗保健提供者的访谈进行需求评估，将为心理教育干预的发展提供信息，旨在减轻AD患者的失禁严重程度和预防皮肤损伤，提高护理人员的掌握程度并减少护理人员的压力，并促进提供者与患者/护理人员进行有效的治疗互动。研究结果有可能延迟制度化和改善老年痴呆症护理接受者的福祉。让来自社区伙伴组织的利益攸关方（非正式护理人员和卫生保健提供者）参与进来，有可能增进他们对研究的理解，并提高其产生符合其需求的干预措施的能力。它还将促进今后测试和传播干预措施。

DESCRIPTION (as provided by applicant): Loss of bladder and/or bowel control (i.e., incontinence) occurs as Alzheimer's disease or dementia (AD) progresses. Skin damage, in the form of perineal dermatitis and pressure ulcers, is the most frequent physical consequence of incontinence and increases care needs. This study seeks to better understand the unmet needs of informal caregivers from diverse racial and ethnic backgrounds and healthcare providers caring for persons with AD in relation to incontinence and skin care. Nearly 10 million Americans are providing informal caregiving for persons with AD, and 32 % provide help for urinary and/or fecal incontinence. Yet people are reluctant to inform their healthcare provider about incontinence, and providers rarely inquire about it. Opportunities for therapeutic consultation are missed. Although embarrassment and social stigma likely play a role in deterring discussion about these problems, there may be other reasons. Low health literacy of caregivers about incontinence and associated skin damage may be a barrier. Healthcare providers may have limited knowledge about the various treatment strategies. Informal caregivers of persons with AD experience multidimensional stressors on their well-being, and incontinence increases caregiving burden; role changes and physical demands related to toileting and cleansing are major stressors. Incontinence is one of the main reasons a person with AD is placed into a nursing home (NH). Despite reductions in their direct care obligations, caregivers feel anxiety and guilt after NH placement and develop new worries about the adequacy of care. More than half of the people in NHs are incontinent and need toileting assistance, and 6-10% have incontinence associated skin damage. Hence, there is a need to strengthen the ability of caregivers and healthcare providers to provide optimal care for AD patients who are incontinent and at risk for skin damage. In this study, we will address both sides of this gap in care. Without early recognition and appropriate measures, skin damage worsens becoming painful, distressful, infected, and costly. Persons with darker skin tones may be at higher risk for lack of identification of skin damage and subsequent greater severity of damage. Psychoeducational interventions ameliorate a number of adverse effects of caregiving and delay institutionalization of the care recipient. In this study, a need assessment using focus groups and interviews of caregivers and healthcare providers, respectively, will inform the development of a psychoeducational intervention intended to lessen incontinence severity and prevent skin damage in the person with AD, increase the mastery and reduce the stress of caregivers, and facilitate providers to initiate effective therapeutic interactions with patients/caregivers. The findings have potential to delay institutionalization and improve the well-being of the AD care recipient. Involving stakeholders from a community partner organization (informal caregivers and healthcare providers) has potential to increase their understanding about research and its ability to produce an intervention that is responsive to their needs. It will also facilitate future testing and dissemination of the intervention. Loss of bladder and/or bowel control and the skin damage that can result are health problems in Alzheimer's disease or dementia (AD). They reduce the quality of life of the care recipient with dementia and increase the burden of family or friend caregivers. Discussion about these problems between informal caregivers and healthcare providers is lacking, and opportunities for treatment recommendations are missed. Assessments of needs related to incontinence and skin damage of informal caregivers of diverse racial and ethnic backgrounds and healthcare providers will guide development of an educational and supportive intervention; the intervention is intended to lessen the severity of accidental bladder or bowel leakage and prevent skin damage in the person with AD, reduce caregiver stress, and facilitate optimal care by healthcare providers and informal caregivers.