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 2021年，美国有超过600万人被诊断患有阿尔茨海默病（AD），痴呆症和 痴呆症是目前主要的公共卫生问题。随着痴呆症的发展， 痴呆症患者（PwD）很难回忆起过去的事件，这些“护理对”很难享受活动， 时间在一起。AD护理者也经历“模糊的损失”-当PwD仍然身体存在， 精神上缺席。研究表明，这样的损失会加剧照顾者失去前的悲伤-一个痛苦的 渴望她/他曾经的PwD，孤独和角色困惑。照顾者失去前的悲伤与 患有抑郁症，生活质量差，代表PwD的医疗决策受损。照顾者悲痛 不仅仅是PwD的记忆和身份的丧失，还有他们共同的关系的丧失。我们的微- 适应损失的社会学理论表明，照顾者的福祉受益于填补 人际关系的重大损失造成的心理空虚。在AD的上下文中，可以通过以下方式来填补这种空白： 活动，使照顾者能够与残疾人分享他们共同过去的记忆，提醒他们快乐， 时代，自豪的时刻，归属感，以及以前的角色和关系，同时提供了一个 有机会表达感情，欣赏，尊重和“玩”。回忆疗法（RT），它使用线索 引发对重大生活事件的回忆，可以解决这种心理社会剥夺。我们的生活记忆主页 (LMH)Web应用程序是一个在线的丧亲资源，我们建议，以适应解决AD照顾者 心理社会剥夺，从而减少照顾者失去前的悲伤，同时改善 关系目的1：我们建议适应LMH照顾者的早期痴呆症患者。关于LMH 将进行调整，以包括由护理人员领导的RT活动。来自30个利益攸关方的投入（例如，现任/已故AD 护理人员，PwD，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2：评价LMH-4-DCP的可行性、可接受性，并探索对结局的影响。护理配对（n=70） 将被随机分为LMH-4-DCP组（n=35）或注意力控制组（LMH排除回忆 活动; n=35）。用户交互（例如，登录、功能使用）和满意度将进行评估， 结果。假设：>70%的照顾者会认为它是可以接受的，并且它的使用与较低的照顾者相关 在1个月随访时，损失前悲伤和改善的关系质量（主要结局）。对照顾者的影响 心理社会剥夺（例如，归属感）（调解人）在2周将进行探索。撞击：LMH-4- DCP将被证明是可接受的，并与减少照顾者损失前的悲伤和提高护理质量有关- 通过以减少心理社会匮乏为目标建立配对关系。结果将用于搜索NIH R 01 资助一项更大规模的LMH-4-DCP随机对照试验。