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The 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Health Care Delivery

Friday, October 1st, 2021 at Weill Cornell Medicine 

Engaging Family and Unpaid Caregivers

Conference Personnel:

Director: Catherine Riffin

Steering Committee: Ronald Adelman, Lauren Bangerter, Sara Czaja, Joan Griffin, Karl Pillemer, Steven Starks, Jennifer Wolff, Loretta Veney, Martha Villanigro-Santiago

Point-of-Contact: Lilla Brody (

PDF icon Attendee Bios

PDF icon Speaker Booklet

Goals & Objectives

The overarching goal of this conference is to establish a policy- and practice-aligned research agenda for enhancing family and other unpaid caregiver engagement and support in health care settings, using Alzheimer’s disease and related dementias (ADRD) as a model for other chronic and progressive diseases.

The specific objectives in achieving this goal are to:

1.   Produce an up-to-date non-technical background paper that reviews the literature on family/unpaid caregiver engagement and support in health care delivery;

2.   Convene a select group of research, practitioner, policy, and community experts for discussion on this topic;
Arrive at consensus regarding research priorities and recommendations; and

3.   Disseminate conference recommendations to a varied and broad audience. Overall, the aim is to create a forum for a continuous loop of communication between research, practice, and advocacy to establish a joint conception of research priorities.

What will happen at the conference?

1.   Experts will provide their views on the most pressing research gaps through a series of six panels, which will set the stage for small group discussions.

2.   In small groups, conference attendees will work together to identify gaps in knowledge to answer the question, “What do we need to know to create an  optimal system of care delivery that effectively engages family and other unpaid caregivers of persons with ADRD?” Research recommendations will be identified through consensus activities; top priorities will be nominated and voted on by attendees.

Conference Agenda:

          8:30am Welcome & Overview of Agenda
          Catherine Riffin

          8:40am Panel Session 1: Caregiver Perspectives
          Panelists: Loretta Veney and Martha Villanigro-Santiago

          9:05am Panel Session 2: Foundation Perspectives
          Panelists: Rani Snyder, Steven Schwab, and Kristen Clifford

          9:40am Panel Session 3: Policy and Economic Perspectives
          Panelists: Courtney Van Houtven, Susan Reinhard, and Shari Ling

          10:15am Coffee Break

  10:45am Panel Session 4: Research Perspectives on Caregiver Assessment and Support
   Panelists: Steven Zarit, Joe Gaugler, Richard Schulz, & Sara Czaja

          11:30am Panel Session 5: Implementation Science Perspectives
          Panelists: Joan Griffin, Laura Gitlin, Jennifer Wolff, & Richard Fortinsky

  12:15pm Panel Session 6: Practice and System Perspectives
  Panelists: Meg Kabat, Ladson Hinton, Donna Benton, and Andrea Gilmore-Bykovskyi

          1:00pm Lunch

          2:00pm Small Group Breakout Session
          Identify Knowledge Gaps & Propose Research Priorities

          2:45pm Full Group Discussion
          Debrief Priorities Identified in Small Group Breakout Session

          3:10pm Coffee Break

   3:40pm Vote on Research Priorities

          3:50pm Closing Comments
          Catherine Riffin and Loretta Veney

          4:00pm Reception

 PDF icon Conference Agenda PDF

Dissemination Activities

A follow-up roundtable discussion will be held a month or so after the conference to arrive at final recommendations. The recommendations will be published, written up for a press release, and disseminated widely to local and national funding agencies, practice associations, and professional organizations. To reach a broader audience, conference attendees are encouraged to share the findings with their local constituencies via social media, word of mouth, and print distribution.

Division of Geriatrics and Palliative Medicine New York-Presbyterian Hospital Weill Cornell Medicine New York, NY