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SPIRIT for End-of-Life Decision Making in Mild Alzheimer's


This study will test an advance care planning intervention called Sharing Patient's Illness Representations to Increase Trust, or SPIRIT, for people with mild dementia and their surrogates to promote early discussions about end-of-life care.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years N/A All No
May 4, 2018
May 31, 2022

  • Diagnosis of dementia
  • Clinical Dementia Rating score of 1 or less (mild dementia), Montreal Cognitive Assessment score of 13 or higher, or Mini-Mental State Examination score of 18 or higher
  • Must be able to choose surrogate decision-maker and consent to study
  • Access to a computer and Internet in a private setting or surrogate has access
  • Both person with dementia and surrogate must be able to understand and speak English

  • Lack of an available surrogate
  • Uncompensated hearing deficits
  • Speech impairment
  • Already has an advance directive

SPIRIT is an intervention designed to promote cognitive and emotional preparation for end-of-life decision making for people with a serious or life-threatening illness and their surrogates. It assists patients in clarifying their end-of-life preferences and helps surrogates understand the patient's wishes and prepare for the surrogate role.

In this study, researchers will work with experts to adapt SPIRIT for use in Alzheimer's disease. Participants with dementia and their surrogates will be randomized to attend one 45- to 60-minute SPIRIT session in-person or via videoconference or to receive usual care information about advance care planning. Participants will have a follow-up phone call 2 to 3 days later, and some will be contacted 1 year later to provide additional feedback. Researchers will measure participants' self-reported preparedness for end-of-life decision making and completion of advance directives.

Name City State Zip Status Primary Contact
Assisted Living Facilities in the Metro Atlanta Area
Atlanta Georgia 30030 Recruiting Maria Bolanos
Grady Health System
Atlanta Georgia 30303 Completed

Emory Clinic Geriatrics
Atlanta Georgia 30329 Recruiting Mi-Kyung Song, PhD
Rush Alzheimer's Disease Center
Chicago Illinois 60612 Recruiting Raj Shah, MD
Northwestern University
Evanston Illinois 60208 Recruiting Darby Morhardt, PhD, LCSW

Emory University

  • National Institute on Aging (NIA)

Name Role Affiliation
Mi-Kyung Song, PhD Principal Investigator Emory University

Name Phone Email
Mi-Kyung Song, PhD 404-727-3134


Preparation for End-of-Life Decision Making in Mild Alzheimer's Disease