SPIRIT advance care planning intervention in early stage dementias: An NIH stage I behavioral intervention development trial

• Authors: Mi-Kyung Song, Emory University; Sandra E. Ward, University of Wisconsin; Kenneth Hepburn, Emory University; Sudeshna Paul, Emory University; Raj C. Shah, Rush University; Darby J. Morhardt, Northwestern University
• Journal Title: Contemporary Clinical Trials
• Volume: Volume 71
• Publisher: Elsevier: 12 months | 2018-08-01, Pages 55-62
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1016/j.cct.2018.06.005
• Subjects: Health Sciences, Nursing; Biology, Neuroscience; Health Sciences, Medicine and Surgery
• Keywords: Science & Technology; Life Sciences & Biomedicine; Medicine, Research & Experimental; Pharmacology & Pharmacy; Research & Experimental Medicine; Alzheimer's disease; Dementia; Advance care planning; End-of-life care; Randomized trial; AMERICAN DIALYSIS PATIENTS; EARLY COGNITIVE IMPAIRMENT; SURROGATE DECISION-MAKERS; ALZHEIMERS-DISEASE; PATIENT EDUCATION; REPRESENTATIONAL APPROACH; CONCEPTUAL CHANGE; INFORMED CONSENT; LIFE; CAPACITY

Abstract

People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote). Then in a 3-group RCT with 120 patient-surrogate dyads, we will evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT remote, and preliminary efficacy of SPIRIT compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. This Stage I research of SPIRIT will generate valuable insights regarding how to improve ACP for people with mild dementia who will progress to an advanced stage of the disease in the foreseeable future.