The Hospice Advanced Dementia Symptom Management and Quality of Life Trial

Overview

Alzheimer's Disease and Related Disorders (dementia) are a group of serious life limiting illness that cause significant challenges to our public health system, with significant illness burden for both the person with dementia and the caregiver. At the end of life, over 230,000 persons with dementia annually are cared for in hospice, yet hospice agencies are ill prepared to care for this population and often resort to inappropriate pharmacologic measures such as antipsychotics that reduce quality of life rather than improve it. This study will therefore through its two phases refine and then implement, using a pragmatic stepped wedge trial design, the Dementia Symptom Management at Home Program Hospice Edition, with the goal improving quality of care for the person with dementia and their caregiver, reducing antipsychotic use, and increasing bereaved caregiver satisfaction in the hospice setting.

Full Title of Study: “The Hospice Advanced Dementia Symptom Management and Quality of Life Trial (HAS-QOL)”

Study Type

  • Study Type: Interventional
  • Study Design
    • Allocation: Non-Randomized
    • Intervention Model: Single Group Assignment
    • Primary Purpose: Supportive Care
    • Masking: None (Open Label)
  • Study Primary Completion Date: June 12, 2019

Interventions

  • Behavioral: Dementia symptom management at home hospice edition
    • Quality assurance performance improvement program
  • Behavioral: Education and Training
    • Education and training

Arms, Groups and Cohorts

  • Experimental: Advanced Demential Patients
  • Experimental: Hospice IDT Members

Clinical Trial Outcome Measures

Primary Measures

  • Percentage of Hospice IDT Members Who Complete Required Education and Training
    • Time Frame: 2 Months
    • Percentage of Hospice IDT Members who Complete Required Education and Training

Participating in This Clinical Trial

Inclusion Criteria

  • Must have dementia as primary diagnosis for admission to hospice – Must be newly admitted to a participating hospice – Must be 50 years or older Clinicians: – Must be a skilled clinician or home health aide who provides care through an eligible home health agency – Must be 18 years or older Exclusion Criteria:

Persons with Dementia:

  • None Clinicians: – None

Gender Eligibility: All

Minimum Age: 50 Years

Maximum Age: N/A

Are Healthy Volunteers Accepted: No

Investigator Details

  • Lead Sponsor
    • NYU Langone Health
  • Collaborator
    • National Institutes of Health (NIH)
  • Provider of Information About this Clinical Study
    • Sponsor
  • Overall Official(s)
    • Abraham Brody, PhD, Principal Investigator, NYU Langone Health

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