Adapting CAPABLE as CAPABLE-Family for the Caregiver Care-Recipient Dyad with Alzheimer's Disease and Related Dementias (ADRD) and Disability

使患有阿尔茨海默氏病及相关痴呆症 (ADRD) 和残疾的看护者与被看护者二元组的能力成为能力家庭

• 批准号: 10396081
• 负责人: Emerald Jenkins
• 金额: $ 1.75万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-01 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10396081
• 关键词: Activities of Daily Living; Address; Adult; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Attention; Behavior Therapy; Behavioral; Caregiver Burden; Caregiver well-being; Caregivers; Caring; Chronic; Clinical Trials; Cognitive; Collaborations; Communication; Communities; Degenerative Disorder; Dementia; Dependence; Development; Disease; Distress; Elderly; Empathy; Environment; Evidence based program; Family; Family Caregiver; Feedback; Foundations; Funding; Future; Goals; Grant; Health; Health care facility; Healthcare; Home; Home environment; Hospice Care; Human; Impaired cognition; Income; Individual; Intervention; Interview; Link; Long-Term Care; Measures; Mental Depression; Mental Health; Mentors; Methods; Minority; Mission; Modeling; Morbidity - disease rate; National Institute on Aging; Nursing Homes; Occupational Therapist; Outcome; Pain; Participant; Personal Satisfaction; Persons; Phase; Physical Function; Physiological; Polypharmacy; Process; Program Development; Provider; Psychological Impact; Public Health; Qualitative Methods; Qualitative Research; Randomized Controlled Trials; Registered nurse; Research; Risk Factors; Scientist; Site; Social Impacts; Social isolation; Societies; Source; Supervision; Techniques; Testing; Time; Training; Training and Education; United States; Visual; age related; aging in place; base; care recipients; career development; caregiver stress; caregiving; cognitive ability; design; disability; disabling disease; economic impact; effective intervention; experience; functional independence; high risk; human centered design; human old age (65+); ideation; improved; improved functioning; informal caregiver; innovation; instrumental activity of daily living; meetings; member; mental state; mortality; mortality risk; open label; physical conditioning; physically handicapped; programs; protocol development; prototype; psychological distress; skills; social

Project Summary Co-occurring physical and cognitive impairments are an important public health concern in older adults with Alzheimer's Disease and Related Dementias (ADRD) leading to: decreased functional independence and increased mortality. Caregiving for persons with co-occurring ADRD and physical disability is a direct risk factor for nursing home placement for care recipients, and a source of chronic physiologic stress for caregivers resulting in poor health, lost income, physical burden, psychological distress, social isolation and for those most distressed, increased risk of mortality. Thus, it is important to maintain and improve the cognitive and functional ability of older adults with ADRD and their caregivers. The majority of studies for physical interventions in older adults with cognitive impairment focus on: (1) ADRD in later stages, (2) nursing home and long-term care facility residents instead of home-based settings, and (3) few outcomes directly measured physical function (ADLs, IADLs) with geriatric standards of care. The scientific gap is a physical intervention in older adults with cognitive impairment which focuses on: (1) ADRD in earlier stages, (2) home-based settings, and (3) outcomes directly measuring function with Katz ADLs and Lawton's IADLs. The CAPABLE program is currently implemented in more than 30 sites across 16 states and uses the expertise of a Registered Nurse (RN), Occupational Therapist (OT), and Handyworker (HW) to address the home environment and strengths of older adults with disability to improve function, however excludes persons with ADRD. The purpose of this study is to address the needs of older adults with co-occurring ADRD and physical disability and their caregivers with a human centered design (HCD) program, CAPABLE-Family, using the Verbrugge and Jett Disablement Process Model as the theoretical framework. The long term-goal is to offer CAPABLE-Family at CAPABLE sites across the nation, providing benefits to a broader range of older adults. The specific aims are: SA1: To adapt the CAPABLE program to focus on meeting the needs of older adults with co-occurring ADRD and physical disabilities and their caregivers (CAPABLE-Family), and SA2: To evaluate the acceptability, feasibility, and preliminary effect size of CAPABLE-Family in older. In SA1, the dissertation study, the applicant seeks to identify caregiver and care recipient needs, such as: disability, environmental challenges, pain, depression, polypharmacy, provider communication needs, and caregiver burden. This study aligns with the NIA's mission to include research on chronic disabling, and degenerative diseases of aging, with a particular focus on AD; on multiple morbidities, on individual behavioral changes with aging, and on caregiving. The 1-year protocol development includes: contextual qualitative research, synthesis/ideation, and prototype testing from HCD with n=10 dyads, 10 RNs, and 10 OTs. Phases 4/5 provide clinical trials research experience directed by the Primary Mentor. This research contributes to the development of a goal-directed human-centered behavioral intervention for older adults.

项目摘要 共同发生的身体和认知障碍是老年人的一个重要的公共卫生问题 阿尔茨海默病和相关痴呆(ADRD)导致：功能独立性降低和 死亡率上升。照顾同时患有ADRD和肢体残疾的人是一个直接的危险因素 为护理接受者安排养老院，并导致照顾者慢性生理压力的来源 健康状况不佳，失去收入，身体负担，心理痛苦，社会孤立，以及对大多数 痛苦，死亡风险增加。因此，保持和改善认知和功能是很重要的 老年ADRD患者及其照顾者的能力。对老年人进行物理干预的大多数研究 成人认知障碍主要集中在：(1)ADRD的晚期，(2)养老院和长期护理设施 居民而不是家庭环境，以及(3)直接测量身体功能的结果很少(ADL， IADLS)和老年护理标准。科学上的差距是对患有认知障碍的老年人的身体干预 损害集中在：(1)早期的ADRD，(2)以家庭为基础的环境，(3)直接结果 用Katz ADLS和Lawton‘s IADLS测量功能。有能力的计划目前在 16个州的30多个地点，并使用注册护士(RN)、职业治疗师的专业知识 (OT)和HandyWorker(HW)，以解决残疾老年人的家庭环境和优势，以 改善功能，但不包括ADRD患者。这项研究的目的是解决这一需求 患有ADRD和肢体残疾的老年人及其照顾者以人为中心 设计(HCD)计划，Capable-Family，使用Verbrugge和Jett残疾流程模型作为 理论框架。长期目标是在全国各地的有能力的地点提供有能力的家庭， 为更广泛的老年人提供福利。具体目标是：SA1：适应能者 该计划的重点是满足患有ADRD和肢体残疾的老年人及其 照料者(有能力的家庭)和SA2：评估可接受性、可行性和初步效果大小 有能力的--老年人中的家庭。在论文研究SA1中，申请者试图确定照顾者和照顾者 接受者的需求，例如：残疾、环境挑战、疼痛、抑郁、多药、提供者 沟通需求和照顾者负担。这项研究与NIA的使命一致，即包括对 慢性致残和老年性退行性疾病，特别侧重于AD；关于多种疾病，关于 个体行为会随着年龄的增长而变化，也会随着照看能力的变化而变化。为期一年的协议开发包括： 来自HCD的上下文定性研究、综合/构思和原型测试，n=10个二元，10个RN， 和10个OT。阶段4/5提供由初级导师指导的临床试验研究经验。这项研究 有助于为老年人制定以目标为导向、以人为中心的行为干预。