RECRUITING

LEADing Dementia End-of-Life Planning Conversations

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

Advance care planning is important for all adults, but perhaps even more so for the 5.7 million persons with Alzheimer's disease or related dementia (ADRD), due to the progressive and protracted cognitive deterioration associated with the disease process. In the context of ADRD, medical decision-making at the end of life is typically left to one's care partner, who often does not have the knowledge or confidence in their ability to make such decisions. This study will refine and evaluate a web-based platform, called the LEAD Intervention (Life-Planning in Early Alzheimer's and other Dementias), which is designed to help persons in the preclinical or early stage of ADRD engage in conversations about, document, and share their end-of-life values and preferences with a care partner, extended family members, and health care providers.

Official Title

LEADing Dementia End-of-Life Planning Conversations

Quick Facts

Study Start:2024-07-17
Study Completion:2027-06-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05909189

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years to 100 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Care Recipient (CR) is age 50+
  2. * CR Is interested in having conversations about and documenting wishes for future end-of-life care
  3. * CR has noticed changes in memory or thinking skills indicative of preclinical or early stage of AD, OR
  4. * CR has been diagnosed with mild cognitive impairment, Alzheimer's disease, or another type of dementia and in the preclinical or early stage
  5. * Care Partner (CP) is age 18+
  6. * CP is a Spouse/partner, family member, or close friend of CR
  1. * Has moderate to severe symptoms of dementia

Contacts and Locations

Study Contact

Kara Dassel, PhD
CONTACT
801-646-4667
kara.dassel@nurs.utah.edu
Nancy Aruscavage, MS
CONTACT
8015988425
nancy.aruscavage@nursing.utah.edu

Principal Investigator

Kara Dassel, PhD
PRINCIPAL_INVESTIGATOR
University of Utah

Study Locations (Sites)

University of Utah College of Nursing
Salt Lake City, Utah, 84112
United States

Collaborators and Investigators

Sponsor: University of Utah

  • Kara Dassel, PhD, PRINCIPAL_INVESTIGATOR, University of Utah

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-07-17
Study Completion Date2027-06-30

Study Record Updates

Study Start Date2024-07-17
Study Completion Date2027-06-30

Terms related to this study

Keywords Provided by Researchers

  • advance care planning
  • caregiving
  • decision-making

Additional Relevant MeSH Terms

  • Alzheimer Disease
  • Mild Cognitive Impairment