Supporting Family Caregivers of Persons with Dementia

支持痴呆症患者的家庭照顾者

基本信息

批准号：
10550182
负责人：
George Demiris
金额：
$ 59.45万
依托单位：
UNIVERSITY OF PENNSYLVANIA
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-01-15 至 2026-12-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10550182
关键词：
Absence of pain sensation Activities of Daily Living Address Adoption Affect Agitation Alzheimer&apos s disease caregiver Alzheimer&apos s disease diagnosis Alzheimer&apos s disease patient Alzheimer&apos s disease related dementia American Anxiety Area Behavior Therapy Caregivers Caring Cessation of life Chronic stress Cognitive Therapy Communication Confusion Control Groups Cost Analysis Critical Care Dementia Dementia caregivers Deterioration Elderly Enrollment Etiology Family Family Caregiver Family member Feeling Friends General Population Goals Grief reaction Health Health Professional Healthcare Hospice Care Hour Household Hygiene Intervention Longitudinal Studies Medication Management Mental Depression Modeling National Institute on Aging Outcome Pain Pain management Pain quality Palliative Care Patient Care Patient Self-Report Patients Perception Pharmacologic Substance Philosophy Pilot Projects Placebo Effect Population Prevalence Public Health Publishing Quality of Care Quality of life Randomized Reporting Role Services Social support Spouses Stress Symptoms Training Translations Transportation United States United States National Institutes of Health Work advanced dementia anxiety reduction attentional control behavior observation caregiver education caregiver interventions caregiving cost cost comparison dementia care design empowerment experience family caregiving family support group intervention high risk hospice environment improved informal caregiver patient population physical conditioning post intervention premature primary outcome randomized, clinical trials research study satisfaction secondary outcome standard care success therapy development video chat

项目摘要

Project Summary Efforts to accurately estimate the prevalence of pain and quality of pain management in the population of patients with Alzheimer’s Disease and Related Dementias (ADRD) have met with varied success. Communication about pain can be extremely challenging for patients with advanced dementia, and the etiology of pain difficult to determine. In addition, patients may resist pain treatments due to their inability to understand the purpose of analgesia and may receive decreased benefit from analgesia due to the disruption of the placebo effect. Family caregivers (family members, spouses, friends or others who assume the critical caregiving role) are at high risk for chronic stress, deteriorating physical health, financial difficulties, and premature death. They suffer from high rates of depression, anxiety and grief; pain management for their patients has been one of the most commonly expressed concerns. Based on preliminary work whereby we examined pain management challenges and needs of caregivers of patients with ADRD, we designed a behavioral intervention entitled ENCODE to assist caregivers in effectively identifying and communicating their pain management challenges and needs. We propose a 5- year randomized clinical trial in which caregivers of patients with ADRD will be randomly assigned to a group receiving standard care with the addition of “friendly calls” (attention control group) or a group receiving standard care with the addition of the ENCODE intervention (intervention group). The specific aims are to assess the impact of the intervention on caregiver outcomes including quality of life, health, anxiety and depression, and their perceptions of the intervention. Additionally, in order to facilitate the adoption of the intervention in practice we will conduct a cost analysis demonstrating the costs associated with its delivery and identify barriers and facilitators to adoption.

项目概要准确估计疼痛流行率和疼痛管理质量的努力患有阿尔茨海默病和相关痴呆症 (ADRD) 的患者群体曾遇到过对于取得不同成功的患者来说，关于疼痛的沟通可能极具挑战性。此外，晚期痴呆和疼痛的病因学也难以确定。由于无法理解镇痛的目的而抵制疼痛治疗，并且可能由于安慰剂效应的破坏，镇痛效果减少。照顾者（家庭成员、配偶、朋友或承担关键照顾角色的其他人）面临慢性压力、身体健康状况恶化、经济困难的高风险，以及他们遭受抑郁、焦虑和悲伤痛苦的比例很高；患者的管理一直是最常见的担忧之一。在初步工作中，我们研究了疼痛管理的挑战和需求针对 ADRD 患者的护理人员，我们设计了一种名为 ENCODE 的行为干预措施帮助护理人员有效识别和传达他们的疼痛管理挑战我们建议开展一项为期 5 年的随机临床试验，其中患者的护理人员将参与其中。 ADRD 将被随机分配到接受标准护理并加上“友好”的组呼叫”（注意力控制组）或接受标准护理的组 ENCODE 干预（干预组）的具体目标是评估干预措施的影响。对护理人员结果的干预，包括生活质量、健康、焦虑和抑郁，以及他们对干预措施的看法，以促进通过。在实践中的干预，我们将进行成本分析，证明与以下方面相关的成本其交付并确定采用的障碍和促进因素。