The Living Memory Home: Reducing Grief and Improving Relationships between Home-based Patients with ADRD and Their Family Caregivers

项目摘要 2021年，美国有超过600万人被诊断出患有阿尔茨海默病(AD)，痴呆症和 痴呆症护理现在是主要的公共卫生问题。随着痴呆症的发展，它变得越来越多 痴呆症患者(PWD)很难回忆过去的事件，这些“照顾对”很难享受活动和 在一起的时间。AD照顾者也会经历“模棱两可的损失”--当残障患者仍然在身体上，但 精神错乱。研究表明，这样的损失会加剧照顾者失去前的悲痛--一种痛苦 向往S/他的残障，孤独，角色迷茫。照顾者失去前的悲痛与 患有抑郁症，生活质量不佳，损害了代表残疾人的医疗决策。护理者悲痛不已 不仅是残疾人失去了记忆和身份，也失去了他们之间的关系。我们的微型- 适应损失的社会学理论表明，照顾者的幸福感得益于填补 由重大的人际关系损失造成的心理社会空虚。在AD的情况下，可以通过以下方式来填补这些空白 让照顾者与残疾人士分享他们共同过去的记忆，提醒他们快乐的活动 时间，骄傲的时刻，归属感，以及以前的角色和关系，同时提供 表达爱意、欣赏、尊重和“玩耍”的机会。回忆疗法(RT)，它使用线索 引发对重大生活事件的回忆，可能会解决这种心理社会匮乏问题。我们活着的记忆家园 (LMH)Web应用程序是一个在线丧亲资源，我们建议对其进行调整，以解决AD照顾者的问题 心理社会剥夺，从而减少照顾者失去前的悲痛，同时改善照顾者-PWD 两性关系。目的1：我们建议将LMH用于早期痴呆患者的照顾者。LMH 将被修改为包括由照顾者领导的RT活动。来自30个利益相关者的意见(例如，当前/失去的广告 护理人员、残疾人、痴呆症专家)将为LMH-4-痴呆症护理对(LMH-4-DCP)的创建提供信息。 目的：评价LMH-4-DCP的可行性、可接受性，并探讨其对预后的影响。护理配对(n=70) 将被随机分为LMH-4-DCP(n=35)或注意力控制条件(LMH排除回忆 活动；n=35)。用户交互(例如，登录、功能使用)和满意度将作为主要评估 结果。假设：70%的照顾者会接受它，并且它的使用与较低照顾者相关 在1个月的随访中，失去前的悲伤和改善的关系质量(主要结果)。对照顾者的影响 将探讨2周时的心理社会剥夺(例如，归属感)(调解人)。影响：LMH-4- DCP将被证明是可接受的，并与减少照顾者失去前的悲伤和提高护理质量相关- 通过以减少心理社会匮乏为目标的配对关系。结果将用于搜索NIH R01 资助一项更大规模的LMH-4-DCP随机对照试验。

Project Summary With over 6 million people in the United States diagnosed with Alzheimer’s disease (AD) in 2021, dementia and dementia caregiving are now major public health concerns. As dementia advances, it becomes increasingly difficult for the person with dementia (PwD) to recall past events and for these “care pairs” to enjoy activities and time together. AD caregivers also experience “ambiguous loss”– when the PwD is still physically present but mentally absent. Research has shown that such losses can exacerbate caregiver pre-loss grief – a painful yearning for the PwD as s/he used to be, loneliness, and role confusion. Caregiver pre-loss grief is associated with depression, poor quality of life, impaired medical decision-making on the PwD’s behalf. Caregivers grieve not just the PwD’s loss of memory and identity, but also the loss of the relationship that they shared. Our micro- sociological theory of adaptation to loss suggests that caregivers’ well-being benefits from filling the psychosocial voids created by significant interpersonal loss. In the context of AD, such voids might be filled by activities enabling caregivers to share memories with the PwD of their common past, reminding them of happy times, proud moments, feelings of belonging, and of former roles and relationships, while providing an opportunity to show affection, appreciation, respect, and “play”. Reminiscence Therapy (RT), which uses cues to trigger recall of significant life events, may address such psychosocial deprivations. Our Living Memory Home (LMH) web application is an online bereavement resource that we propose to adapt to address AD caregiver psychosocial deprivations and, thereby, reduce caregiver pre-loss grief while improving the caregiver-PwD relationship. Aim 1: We propose to adapt LMH for caregivers of patients with early-stage dementia. The LMH will be adapted to include RT activities led by caregivers. Input from 30 stakeholders (e.g., current/ bereaved AD caregivers, PwD, dementia experts) will inform the creation of the LMH-4-Dementia Care Pairs (LMH-4-DCP). Aim 2: To evaluate LMH-4-DCP feasibility, acceptability, and explore effects on outcomes. Care pairs (n=70) will be randomized to LMH-4-DCP (n=35) or an attention control condition (LMH excluding reminiscence activities; n=35). User interaction (e.g., logins, feature usage) and satisfaction will be assessed as will primary outcomes. Hypothesis: >70% of caregivers will find it acceptable, and its use associated with lower caregiver pre-loss grief and improved relationship quality (primary outcomes) at 1-month follow-up. Effects on caregiver psychosocial deprivations (e.g., sense of belonging) (mediators) at 2-weeks will be explored. Impact: LMH-4- DCP will prove acceptable and associated with reduced caregiver pre-loss grief and improved quality of the care- pair relationship via targeting the reduction of psychosocial deprivations. Results will be used to seek NIH R01 funding of a larger randomized controlled trial of LMH-4-DCP.