A Problem Solving Intervention for Hospice Caregivers

摘要 近年来，对临终关怀的需求显著增加，现在提供给 每年有150多万美国人身患绝症。2017年，18%的人入住了临终关怀 在美国，最初的临终关怀诊断为痴呆症，其中超过三分之一的人有 阿尔茨海默病或相关痴呆(ADRD)的初步诊断。一个必不可少的组成部分 临终关怀服务包括非正式的照顾者，即家庭成员、配偶、朋友 或在生命末期承担照顾所爱之人的角色的其他人(下称 作为简单的照顾者)。ADRD患者的照顾者面临着特别大的压力 与延长护理时间有关，潜在的行为问题在晚期很常见- 晚期痴呆，以及终末期ADRD患者的极度损害和虚弱。 超过一半的终末期痴呆症患者的照顾者必须终止或减少 并表现出非常严重的抑郁症状。干预措施以提供 在ADRD结束阶段支持和促进应对，并努力了解如何 社会人口因素和社会支持可以说明这种努力的有效性， 值得注意的是缺乏。我们目前正在测试一种名为 双鱼(支持临终关怀环境中的照顾者的问题解决干预) 旨在评估将面对面和视频相结合的混合交付平台是否 会议会议可以与面对面提供干预措施一样有效。而当 这项工作涉及所有临终关怀者，相当一部分样本(几乎三分之一)包括 ADRD患者的照顾者。鉴于他们独特的经历，我们认识到有必要研究 更详细地描述了这一群体。这项行政补充提案的具体目的 是了解临终关怀患者护理人员的独特特点和需求 ADRD，探索社会人口因素、社会支持和照顾者类型(基于 通信类型学)会影响专门为以下患者的护理人员提供的整体临终关怀体验 ADRD患者，并与患者照顾者共同完善和定制双鱼座干预 与ADRD合作，专门满足他们的需求。

Abstract In recent years, the demand for hospice care has increased significantly, and is now provided to over 1.5 million terminally ill Americans annually. In 2017 18% of all people admitted to hospice in the US had a primary hospice diagnosis of dementia and more than one third of them had a primary diagnosis of Alzheimer's Disease or related dementia (ADRD). An essential component of hospice care services includes the informal caregivers, i.e., family members, spouses, friends or others who assume the caregiving role for a loved one at the end of life (hereafter referred to as simply caregivers). Caregivers of ADRD patients face particularly stressful demands associated with the extended length of care, potential behavioral problems common in late- stage dementia, and the extreme impairment and debilitation of patients with end-stage ADRD. More than half of caregivers of patients with end stage dementia have to end or reduce employment and exhibit very high levels of depressive symptoms. Interventions to provide support and facilitate coping during the end stages of ADRD, and efforts to understand how socio-demographic factors and social support may elucidate the effectiveness of such efforts, are notably lacking. We are currently testing a problem-solving therapy intervention entitled PISCES (Problem Solving Intervention to Support Caregivers in End of Life Care Settings) aiming to assess whether a hybrid platform for its delivery combining in-person and video- conferencing sessions can be as effective as the in-person delivery of the intervention. While this work involves all hospice caregivers, a significant sample portion (almost one third) includes caregivers of ADRD patients. Given their unique experiences we recognize the need to study this population in greater detail. The specific aims of this administrative supplement proposal are to understand the unique characteristics and needs of caregivers of hospice patients with ADRD, explore how socio-demographic factors, social support and caregiver type (based on a communication typology) affect the overall hospice experience specifically for caregivers of ADRD patients, and refine and tailor the PISCES intervention jointly with caregivers of patients with ADRD to specifically address their needs.