Palliative Care for Persons with Late-stage Alzheimer's and Related Dementias and their Caregivers: a Randomized Clinical Trial

对晚期阿尔茨海默病和相关痴呆症患者及其护理人员的姑息治疗：一项随机临床试验

• 批准号: 10461880
• 负责人: LAURA C HANSON
• 金额: $ 87.33万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-10 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10461880
• 关键词: Acute; Address; Advance Directives; Affect; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Awareness; Caregivers; Caring; Colorado; Communication; Communities; Decision Making; Dehydration; Dementia; Dementia caregivers; Dependence; Distress; Education; Educational Materials; Elderly; Emergency department visit; Emotional; Enrollment; Equipment and supply inventories; Family; Family Caregiver; Financial Hardship; General Hospitals; Geography; Goals; Health care facility; Healthcare; Home; Hospitalization; Hospitals; Indiana; Infection; Intervention; Learning; Length of Stay; Massachusetts; Nomads; North Carolina; Nursing Homes; Outcome; Palliative Care; Palliative Care Nursing; Patient-Focused Outcomes; Patients; Persons; Prognosis; Quality of Care; Quality of life; Questionnaires; Randomized; Randomized Clinical Trials; Rapid screening; Reporting; Research; Science; Self Perception; Services; Site; Standardization; Symptoms; System; Testing; Universities; advanced dementia; arm; base; caregiver education; caregiver strain; case finding; comorbidity; cost; dementia caregiving; design; end of life; experience; fall injury; hospice environment; improved; improved outcome; indexing; member; neuropsychiatric symptom; neuropsychiatry; novel; palliative; patient oriented; physical symptom; primary outcome; prognostic; programs; secondary outcome; shared decision making; symptom management; symptom treatment; symptomatic improvement; treatment arm

ABSTRACT Alzheimer’s disease and related dementias (ADRD) affect 5.6 million Americans at an annual cost of $157 billion. Three million Americans have late-stage ADRD with suffering caused by progressive dependency and distressing symptoms. Family caregivers experience extraordinary physical, emotional and financial strain. Hospitalizations for acute illnesses are common in late-stage ADRD, with worsened symptoms and distressing decisions about goals of care and intensive treatments. Hospitalizations also present a unique opportunity for dementia-specific palliative care to address suffering and reduce burdensome treatments, since 72% of hospitals have palliative care teams. Palliative care improves symptom control and quality of life in serious illnesses, but has never been adapted and tested for the unique needs of late-stage ADRD. We therefore developed the ADRD Palliative Care (ADRD-PC) program. Using a novel rapid screening system, we randomized 62 dyads of hospitalized patients with late-stage ADRD and their family caregivers to the ADRD-PC program vs education control. Intervention dyads received i) dementia-specific palliative care, ii) standardized caregiver education, and iii) transitional care delivered by an interdisciplinary palliative care team; control dyads received educational material on dementia caregiving. The ADRD-PC program was well- accepted, and resulted in significant improvements in use of hospice, symptom management, caregiver communication about prognosis and goals of care, new advance directives, and “Do Not Hospitalize” orders. The necessary next step to advance the science of dementia-specific palliative care is an adequately powered RCT of the efficacy of the ADRD-PC program to improve patient and family centered outcomes. Our research objective is to conduct a multi-site efficacy RCT of the ADRD-PC program. We will enroll 424 dyads of hospitalized patients with late-stage ADRD and family caregivers at 4 geographically diverse member sites of the Palliative Care Research Cooperative group. Our Specific Aims are: Aim 1: To conduct a multi-site RCT of the ADRD-PC program of dementia-specific palliative and transitional care (intervention arm) vs publicly available educational material for dementia caregivers (control arm) to compare 60-day hospital transfers (hospitalization and emergency room visits) for persons with late-stage ADRD (primary outcome). Aim 2: To compare patient-centered secondary outcomes between intervention and control arms: a) symptom treatment; b) symptom control; c) post-acute use of community palliative care or hospice; and d) new nursing home transitions. Aim 3: To compare caregiver-centered secondary outcomes between intervention and control arms: a) communication about prognosis and goals of care; b) shared decision-making; and c) caregiver distress. IMPACT: ADRD-PC has the potential to reduce suffering for millions of persons with late-stage ADRD.

摘要