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.

项目摘要 美国有超过600万人于2021年诊断出患有阿尔茨海默氏病（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 痴呆症患者（PWD）很难回想起过去的事件，而这些“护理对”很难享受活动和 在一起时间。广告护理人员还会遇到“模棱两可的损失” - 当PWD仍在物理上时 精神缺席。研究表明，这种损失会加剧护理人员的损害前的贪婪 - 痛苦 渴望以PWD为他/他曾经是Loungess和角色困惑。护理人员前妓女有关联 抑郁症，生活质量差，代表PWD的医疗决策受损。照顾者感到悲伤 不仅是PWD失去记忆力和身份，而且是他们共享的关系的丧失。我们的微型 适应损失的社会学理论表明，护理人员的福祉受益于填补 由人际际损失造成的社会心理空隙。在AD的背景下，此类空隙可能被 使护理人员能够与他们共同过去的PWD分享记忆的活动，使他们想起快乐 时代，骄傲的时刻，归属感以及以前的角色和人际关系，同时提供 表现出感情，欣赏，尊重和“玩耍”的机会。回忆疗法（RT），使用线索 为了触发重大生活事件的回忆，可能会解决这种社会心理剥夺。我们的生活记忆之家 （LMH）Web应用程序是我们建议适应广告护理人员的在线丧亲资源 社会心理剥夺，从而减少护理人员的损害前贪婪，同时改善护理人员-PWD 关系。目标1：我们建议适应LMH的早期痴呆症患者的护理人员。 LMH 将适应包括护理人员领导的RT活动。来自30个利益相关者的输入（例如，当前/失去丧亲的广告 护理人员，PWD，痴呆症专家）将告知创建LMH-4痴呆护理对（LMH-4-DCP）。 目标2：评估LMH-4-DCP的可行性，可接受性和探索对结果的影响。护理对（n = 70） 将随机分为LMH-4-DCP（n = 35）或注意力控制条件（LMH不包括提醒 活动; n = 35）。用户互动（例如，登录，功能使用情况）和满意度将作为主要的评估 结果。假设：> 70％的看护人会发现它可以接受，并且与较低的护理人员有关 在1个月的随访中，损害前的贪婪和改善的关系质量（主要结果）。对看护人的影响 将探索2周的社会心理剥夺（例如，归属感）（调解人）。影响：LMH-4-- DCP将被证明是可以接受的，并且与减少护理人员的损害前贪婪以及护理质量的提高相关 - 通过定位减少社会心理剥夺的关系。结果将用于寻找NIH R01 LMH-4-DCP的较大随机对照试验的资金。