Raising Literacy and Capacity for Incontinence and Skin Care in Dementia

描述(申请人提供)：随着阿尔茨海默病或痴呆症(AD)的进展，出现膀胱和/或大便失控(即大小便失禁)。皮肤损伤，以会阴皮炎和压疮的形式出现，是大小便失禁最常见的身体后果，增加了护理需求。这项研究试图更好地了解来自不同种族和民族背景的非正式照顾者以及护理AD患者的医疗保健提供者在大小便失禁和皮肤护理方面的未得到满足的需求。近1000万美国人正在为AD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，人们不愿告知他们的医疗保健提供者有关大小便失禁的情况，而且提供者很少询问这一问题。治疗咨询的机会被错过了。虽然尴尬和社会耻辱可能起到了阻止对这些问题的讨论的作用，但可能还有其他原因。照顾者对大小便失禁和相关皮肤损伤的健康素养较低，这可能是一个障碍。医疗保健提供者可能对各种治疗策略知之甚少。AD患者的非正式照顾者的幸福感经历了多方面的压力源，大小便失禁增加了照护负担；与厕所和清洁有关的角色变化和身体需求是主要的压力源。大小便失禁是AD患者被送进养老院(NH)的主要原因之一。尽管他们的直接护理义务减少了，但护理人员在安置NH后感到焦虑和内疚，并对护理的充分性产生了新的担忧。在NHS中，超过一半的人大小便失禁，需要厕所辅助，6%-10%的人大小便失禁与皮肤损伤相关。因此，有必要加强护理人员和医疗保健提供者的能力，为大小便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，我们将解决这一保健差距的两个方面。如果不及早发现和采取适当的措施，皮肤损害会恶化，变得痛苦、痛苦、感染和代价高昂。肤色较深的人可能面临更高的风险，因为缺乏对皮肤损伤的识别，随后会出现更严重的损伤。心理教育干预改善了护理的一些不利影响，并推迟了护理接受者的制度化。在这项研究中，分别使用焦点小组和对照顾者和医疗保健提供者的访谈进行的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，增加对照顾者的掌握和减轻压力，并促进提供者与患者/照顾者启动有效的治疗互动。这一发现有可能推迟AD护理接受者的制度化并改善其幸福感。让社区合作伙伴组织的利益相关者(非正式护理人员和医疗保健提供者)参与进来，有可能增加他们对研究及其产生响应他们需求的干预措施的能力的了解。它还将促进今后对干预措施的测试和传播。 丧失对膀胱和/或肠道的控制以及可能导致的皮肤损伤是阿尔茨海默病或痴呆症(AD)的健康问题。它们降低了患有痴呆症的护理接受者的生活质量，并增加了家人或朋友照顾者的负担。非正式照顾者和医疗保健提供者之间缺乏关于这些问题的讨论，并且错过了治疗建议的机会。对不同种族和民族背景的非正式照顾者和医疗保健提供者的失禁和皮肤损伤相关需求的评估将指导制定教育和支持性干预措施；该干预措施的目的是减轻意外膀胱或肠道渗漏的严重性，防止AD患者的皮肤损伤，减少照顾者的压力，并促进医疗保健提供者和非正式照顾者的最佳护理。

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.