Developing shared medical appointments for informal caregivers of Alzheimer’s and Dementia patients to improve knowledge, communication, and advanced planning

Project Summary The prevalence of Alzheimer's Disease and related Dementias (ADRD) is expected to triple by 2060, affecting about 14 million Americans. As ADRD progresses, symptoms worsen, putting informal caregivers (ICs) in charge of tending to patients' needs. The majority of ICs are unprepared for the challenges of ADRD and are unaware

that the condition is fatal. Although advance care planning (ACP) discussions about goals and care are encouraged, studies have revealed that they do not promote end-of-life (EOL) conversations. Clinicians do not have enough time for in-depth discussions and when they do occur, they are one-time events during the initial

diagnosis when ICs are distressed and overwhelmed. We propose developing shared medical appointments (SMAs), which are billable, group appointments in which participants are encouraged to ask questions and share their concerns and experiences. SMAs are an ideal environment for EOL discussions because barriers such as

different cultural perspectives, health literacy, and time constraints are all addressed. The long-term goal of the proposed study is to conduct a randomized control trial of SMAs across several hospitals to determine if they facilitate increased knowledge about ADRD and promote goal-concordant about EOL issues. The objective of

this proposal is to identify the most significant EOL concerns in order to create a SMA that includes culturally sensitive appropriate content and is mindful of various health literacy levels. We will conduct surveys and interviews to identify topics, then consult ADRD and caregiving experts about the structure of the SMA, and

evaluate the SMA using pre/post measures. The rationale of this proposal is that by allocating time and space to discuss ADRD's progression toward EOL in an environment where knowledge, concerns, and experiences can be exchanged, effective advance care planning will occur. PI Alpert is an expert in health communication

and qualitative research methods. His mentorship team includes experts in quantitative research methods, intervention development, and evaluation (Dr. Rothberg), health literacy and EOL decision-making (Dr. Paasche- Orlow), and palliative care communication (Dr. Wittenberg). Our study is innovative because we will solicit

recommendations from multiple stakeholders about informational and communication needs about ADRD and EOL, and then use those recommendations to construct a new method of care (SMA) for eliciting EOL preferences. The proposed study is significant because, while discussions about EOL care are encouraged,

current ACP practices fail to achieve goal-concordant treatment. SMAs enhance learning and support, increase trust, and are widely accepted by physicians. This project is expected to have a positive impact by providing evidence for the development of additional ADRD SMAs to increase understanding, improve family and patient-

clinician communication, inform attitudes toward palliative care and hospice, and overall, encourage thoughtful discussions about approaching EOL.