Project Leadership

Project Lead: Heidi Gil, President & CEO, HoodenPyleGil
Project Co-Lead: Stephani Shivers, COO-Community Services, LiveWell Alliance
Key Personnel: Daniel Belonick, Erica DeFrancesco, Brian Connolly
Project Design: Geri and Jim Taylor, Bob Savage, Heidi Gil, Stephani Shivers, Maria O’Connell

Over the 2-year funding period the multi-stakeholder project team will:

  • Expand the reach and diversity of the DPC membership 
  • Build a sustainable PCOR/CER community network of multi-stakeholder partnerships
  • Develop a training program for PLWD, CP, and researchers to partner in research, including a guide to assess capacity to participate 
  • Implement the training program with a small number of diverse—including minority—participants, and refine the program based on lessons learned 
  • Identify, prioritize, and disseminate research topics important to PLWD
  • Compile lessons learned on how to guide PLWD, CP, and researchers interested in partnering as co-researchers in a Program Implementation Toolkit designed to increase project uptake and address critical knowledge gaps
  • The project will incorporate the work of PCORI-funded awardees and their respective evidence-based methods developed by Yale Program for Recover and Community Health, University of Connecticut Center on Aging, and the Alliance for Aging Research. Project partners will also collaborate on strategies to increase access to the PCORnet-funded National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network.

Advisory Council Members

  • Karina Berg, MD, Geriatrician, UCONN
  • Meryl Comer, Project Co-lead AD-PCPRN
  • Richard Fortinsky, Ph.D. Professor, UConn Center on Aging
  • Susan Possidente Good, MS, APRN, Alzheimer’s Disease Research Unit, Yale University School of Medicine
  • Patricia Murphy, Dementia Peer Coalition
  • Katie Maslow, MSW, Gerontological Society of America (Scholar)
  • Maria O’Connell, PhD, Associate Professor, Yale School of Medicine
  • Sue Peschin, President, Alliance for Aging Research
  • Julie Robison, Ph.D. Professor, UConn Center on Aging, LiveWell
  • Bob Savage, Co-founder Dementia Peer Coalition
  • Geri Taylor, Person living with Alzheimer’s
  • Jim Taylor, Spouse and Carepartner
  • Christy Kovel, CT Alzheimer’s Association
  • Teresa Webb, NIH Summit Stakeholder Group

Action Team Stakeholders

Persons Living with Dementia

  • Bob Savage, Co-founder Dementia Peer Coalition
  • Geri Taylor, Person living with Alzheimer’s
  • Patricia Murphy, Dementia Peer Coalition
  • Patricia Pearce, Dementia Peer Coalition
  • Charles Michalak, Dementia Peer Coalition

Care Partners

  • Jim Taylor, Caregiving Spouse
  • Meryl Comer, Caregiving Spouse, Project Co-lead AD-PCPRN
  • Terry Frangiosa, Project Co-chair A-List, USAgainstAlzheimer’s
  • Dr. Sarah Robertson, Univ. of the Sciences, Daughter of P. Robertson
  • Andrea Fix, Daughter of P. Pearce

Researchers

  • Richard Fortinsky, Ph.D. Professor, UConn Center on Aging
  • Julie Robison, Ph.D. Professor, UConn Center on Aging, LiveWell
  • Maria O’Connell, Associate Professor, Yale School of Medicine

Clinicians, Practitioners, Aging Service Professionals

  • Dr. Margarita Reyes, Geriatrician
  • Dr. Alan Siegal, Geriatric Psychiatrist
  • Dr. Karina Berg, Geriatrician
  • Wendy Martinson, Director, Center for Healthy Aging, Hartford
  • Wanda Avila, Whitney Center

Industry

  • Sue Peschin, President, Alliance for Aging Research
  • Katie Maslow, MSW, Gerontological Society of America (Scholar)
  • Eleanora Tornaturo-Mikesh, CEO, CT Alzheimer’s Association
  • Maureen McIntyre, CEO, North Central Area Agency on Aging
  • Meredith Hanley, Director, National Assoc. Area Agency on Aging
  • Mag Morelli, President, LeadingAge CT

LiveWell

Founded in 1990, LiveWell is a dementia services provider and national pioneer committed to positively transform the way PLWD are viewed, engaged, and supported. Through the Empowering Partnerships project, LiveWell will lead a project team of stakeholders to engage a network of PLWD, family care-partners (CP), researchers, and local/national stakeholders to collectively build their capacities to partner in all aspects of person-centered outcomes and clinical effectiveness research.

LiveWell’s commitment to champion issues of importance for PLWD and their families includes support to co-create with PLWD the Dementia Peer Coalition (DPC). The DPC, led by and for those living with dementia, seeks to develop a peer to peer network focused on: peer support, advocacy, research, education, and volunteerism.  This project will catalyze the DPC’s expansion and prepare a network of people living with dementia prepared to engage as partners in all aspects of the research enterprise.

HPG – HoodenPyleGil

HoodenPyleGil (HPG) was founded on the global expertise and 28-year background of driving person-centered outcomes through multi-stakeholder engagement. In the past four years, they have led and collaborated on grants totaling over $7.3M aimed at building community capacity and transforming how services, supports, environments are designed and experienced.  The culmination of these efforts has resulted in a hub and spoke method and process by which a community of stakeholders co-create and design a Community Living Model.  The hub, or Place of Well-being is a beacon for community vibrancy where health and well-being serves are integrated under one roof.  The spokes, or Places of Dynamic Services, are tightly supportive web of services and supports that meet the needs of individuals to thrive in community at all stages of life.  The model’s foundation is based upon guiding principles developed through the voices of all stakeholders and data that reveals community strengths and well-being priorities.