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

生活记忆之家：减少 ADRD 患者及其家庭护理人员的悲伤并改善他们之间的关系

• 批准号: 10665865
• 负责人: Francesca Falzarano
• 金额: $ 26.97万
• 依托单位: WEILL MEDICAL COLL OF CORNELL UNIV
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-05-15 至 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10665865
• 关键词: Address; Adult; Advance Care Planning; Alzheimer' s Disease; Alzheimer' s disease care; Alzheimer' s disease caregiver; Alzheimer' s disease related dementia; Bereavement; Cancer Patient; Caregiver Burden; Caregiver well-being; Caregivers; Caring; Case Study; Cessation of life; Clinical; Confusion; Cues; Data; Decision Making; Dementia; Dementia caregivers; Deterioration; Diagnosis; Disease; Distress; Event; Exclusion; Family Caregiver; Feeling; Feeling suicidal; Functional disorder; Funding; Grief reaction; Happiness; Health; Home; Hypertension; Impairment; Institutionalization; Life; Link; Loneliness; Mediator; Medical; Memory; Memory Loss; Mental Depression; Methodology; Moods; Myocardial Infarction; Nursing Homes; Outcome; Pain; Patients; Persons; Play; Psyche structure; Psychosocial Deprivation; Public Health; Quality of Care; Quality of life; Randomized; Randomized, Controlled Trials; Regrets; Reporting; Research; Resources; Risk Reduction; Role; Sampling; Sociology; Standardization; Therapeutic Intervention; Time; Treatment Efficacy; United States; United States National Institutes of Health; advanced disease; affection; attentional control; caregiver stress; caregiving; dementia care; dementia caregiving; deprivation; design; efficacy study; experience; follow-up; improved; loved ones; meetings; patient home care; primary outcome; psychosocial; satisfaction; shared memory; theories; web app; yearning

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.

项目概要 2021 年，美国将有超过 600 万人被诊断患有阿尔茨海默病 (AD)，痴呆症和 痴呆症护理现已成为主要的公共卫生问题。随着痴呆症的进展，它变得越来越 痴呆症患者 (PwD) 很难回忆起过去的事件，而这些“护理对”也很难享受活动和 在一起的时间。 AD 护理人员也会经历“模糊的失落”——当残疾人仍然在场但 精神上缺席。研究表明，此类损失可能会加剧看护者失去亲人前的悲伤——这是一种痛苦的经历。 对残疾人原来的向往、孤独、角色的困惑。照顾者失去亲人前的悲伤与 患有抑郁症、生活质量差、残疾人的医疗决策受损。护理人员悲痛万分 残疾人不仅失去了记忆和身份，还失去了他们共同的关系。我们的微 适应丧失的社会学理论表明，照顾者的福祉受益于填补 严重的人际关系损失造成的心理社会空白。在AD的背景下，这种空白可能会被填补 活动让照顾者能够与残疾人士分享他们共同的过去，提醒他们快乐的事 时间、自豪的时刻、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），使用线索 触发对重大生活事件的回忆，可以解决这种心理社会剥夺问题。我们记忆中的家 (LMH) 网络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 护理人员的问题 社会心理剥夺，从而减少照顾者失去亲人前的悲伤，同时改善照顾者的残疾状况 关系。目标 1：我们建议为早期痴呆症患者的护理人员调整 LMH。 LMH 将进行调整以包括由护理人员领导的 RT 活动。来自 30 个利益相关者的意见（例如当前/失去亲人的 AD 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。 目标 2：评估 LMH-4-DCP 的可行性、可接受性，并探讨对结果的影响。护理对 (n=70) 将被随机分配至 LMH-4-DCP (n=35) 或注意力控制条件（LMH 不包括回忆） 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% 的护理人员会认为它是可以接受的，并且其使用与较低的护理人员相关 1 个月随访时，失去亲人前的悲伤和改善的关系质量（主要结果）。对护理人员的影响 将探讨两周的社会心理剥夺（例如归属感）（中介）。影响：LMH-4- DCP 将被证明是可接受的，并且与减少护理人员失去亲人前的悲伤和提高护理质量有关。 通过减少社会心理剥夺来建立配对关系。结果将用于寻求 NIH R01 资助一项更大规模的 LMH-4-DCP 随机对照试验。