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National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers: Stakeholder Groups

Stakeholder Groups

 

FAMILY CAREGIVERS

PERSONS LIVING WITH DEMENTIA

STATE GOVERNMENT PROGRAMS

SERVICE PROVIDERS

WORKFORCE DEVELOPMENT

PAYERS

  • Stakeholder Group Paper: Feedback from Health Insurance Companies Regarding Evidence-Based Research for Dementia Care (added October 2017)

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.

 

FAMILY CAREGIVERS

Co-chairs

Gail Hunt
National Alliance for Caregiving
Bethesda, MD

Laurie Lindberg
Gerontological Society of America
Washington, DC

Donna Walberg
Alzheimer's Disease Initiative
St. Paul, MN

  
   

Members

Venoreen Browne-Boatswain
Minneapolis, MN

Bridget Fultz
Indiana University School of Medicine
Center for Aging Research
Indianapolis, IN

Ellen J. Goudeau
Houston, TX

Sharon Hall
Family Caregiver and Frontotemporal Degeneration Advocate
Cumming, GA

Ronald R.J. Hendler
Marriottsville, MD

Mary C. Hogan
Eliot, ME

Dorothy Horne
Columnist and Author
Longview, TX

Kamala Jones
Greensboro, NC

Janna Kaplan
Brandeis University
Waltham, MA

Felita Ramirez
Retired Vocational Family and Consumer Science Teacher
Grapevine, TX

Delma Salazar
Coolidge, AZ

Sowande Tichawonna
Washington, DC

Geralldine Woolfolk
Retired Educator
Oakland, CA

Anita Yuskauskas
Penn State Lehigh Valley
Center Valley, PA

STAKEHOLDER GROUP INTERVIEW: Family Caregivers Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Family Caregivers Stakeholder Group. [PDF Version]

STAKEHOLDER GROUP PAPER: Family Caregiver Stakeholder Workgroup Research Recommendations
This report is a summary of the research recommendations that were developed as a result of six meetings with the members of the Family Caregiver Stakeholder workgroup. [PDF Version]

STAKEHOLDER GROUP PAPER: Top Six Research Outcomes: Family Caregiver Stakeholder Workgroup
This paper is a summary of a set of research outcomes developed by the Family Caregiver Stakeholder workgroup, composed of 14 members and 3 co-chairs. [PDF Version]

 

PERSONS LIVING WITH DEMENTIA

Co-chairs

Gary Epstein-Lubow
Brown University
Providence, RI

Lonni Schicker
St. Louis, MO

Emily Shubeck
Alzheimer's Association
Chicago, IL

Teresa Webb
Phoenix, AZ
   

Members

Pat Etienne
Columbia, MO

Bill Holmstrom
Salem, OR

Cynthia Huling Hummel
Elmira, NY

Edward K. Kaplan
Waltham, MA

Brian LeBlanc
Pensacola, FL

Myriam Marquez
Seattle, WA

Brenda Nicholson
Knoxville, TN

Greg O'Brien
Brewster, MA

Louise Phillips
New York, NY

Brian Van Buren
Charlotte, NC

STAKEHOLDER GROUP INTERVIEW: Persons Living with Dementia Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Persons Living with Dementia Stakeholder Group. [PDF Version]

STAKEHOLDER GROUP PAPER: Research Recommendations: Top 6 Outcomes that Matter
The Stakeholder Group of Persons Living with Dementia includes 12 retired professionals from diverse backgrounds who are each committed to advocacy about dementia care, services and research. All members experience mild or moderate symptoms of a cognitive disorder. The group is co-chaired by two persons living with dementia and the leadership also includes a geriatric psychiatrist and a project coordinator experienced in leading groups of people in the early stages of a cognitive disorder. To prepare these research recommendations, monthly 90-minute meetings were conduced by videoconference, and each meeting included one or more guest senior research leaders. Between monthly meetings, a subgroup met to address logistical concerns regarding the preparation of research recommendations, responses to requests for input about specific research questions, plans for travel to participate in the Summit, and preparations to support persons living with dementia who attend the Summit. Time limitations and the personal experiences of the Group members resulted in an emphasis on research recommendations addressing early stages of illness. The Group produced recommendations categorized into the general areas of research on: new care practices to improve dementia treatment; access to care and services; strategies to promote participation in clinical trials; the experience of living with a cognitive disorder; best practices for working with family members, caregivers and proxy decision-makers; and, use of new terminology and language for public education. After a voting process, the Group decided on the following "Top 6 Outcomes that Matter." [PDF Version]

 

STATE GOVERNMENT PROGRAMS

Co-chairs

David Hoffman
Director
Bureau of Community Integration and Alzheimer's Disease
New York State Department of Health
Albany, NY

Helen M. Matheny
Director
Collaborative Relations and Initiatives
West Virginia University Health Sciences Center
Morgantown, WV

Jennifer Mead
Healthy Aging Coordinator
Aging & People with Disabilities
Oregon Department of Human Services
Portland, OR

  
   

Members

Tomas Aguilar
Bureau Director
Pennsylvania Department of Health
Harrisburg, PA

Kirsten Aird
Chronic Disease Programs Manager
Oregon Public Health Division
Health Promotion & Chronic Disease Prevention
Portland, OR

Danni Atkins
Florida Department of Elder Affairs

Basia Belza
Professor
University of Washington
Seattle, WA

Heather Borski
Division Director
Bureau of Health Promotion
Utah Department of Health
Salt Lake City, UT

Devin Bowers
Dementia Services Coordinator
Virginia Department for Aging and Rehabilitative Services
Henrico, VA

Debra Cherry
Executive Vice President
Alzheimer's Greater Los Angeles
Los Angeles, CA

Paula Clayton
Director
Chronic Disease Prevention and Health Promotion
Kansas Department of Health
Topeka, KS

Mehul Dalal
Chronic Disease Director
Connecticut Department of Public Health
Hartford, CT

Leisa Easom
Executive Director
Rosalynn Carter Institute for Caregiving
Americus, GA

Molly French
Director of Public Health
Alzheimer's Association
Washington, DC

Judith Gabriele
Program Manager
New Mexico Department of Health
Santa Fe, NM

W.T. Geary Jr.
Medical Director/Bureau Director
Bureau of Health Provider Standards
Alabama Department of Public Health
Montgomery, AL

Thea Griffin
Program Advisor
Bureau of Community Integration and Alzheimer's Disease
New York State Department of Health
Albany, NY

Whitney C. Hammond
Section Administrator
New Hampshire Department of Health and Human Services
Concord, NH

Julie Hohn
Program Coordinator
Alzheimer's Disease Program
California Department of Public Health
Sacramento, CA

Melita Jordan
Senior Executive Service Director
New Jersey Department of Health and Senior Service
Trenton, NJ

Gabriel Kaplan
Chief
Health Promotion and Chronic Disease Prevention Branch
Denver, CO

Lisa McGuire
Lead, Alzheimer's Disease and Healthy Aging Program
Centers for Disease Control and Prevention
Atlanta, GA

Carol McPhillips-Tangum
Public Health Consultant
National Association of Chronic Disease Directors
Atlanta, GA

Lynn M. Meinor
Alzheimer's State Plan Specialist
Utah Department of Health
Salt Lake City, UT

Sharon Moffatt
Senior Advisor
Public Health Leadership and Transformation
Washington, DC

Gwen Moni
Research Coordinator
University of Washington
Seattle, WA

Lisa Morley
Senior Grants Manager
Division of Senior and Disabilities Services
Juneau, AK

B. Michael Nayeri
Director, Healthy Aging Program (A-HA)
Arizona Department of Health Services
Phoenix, AZ

Caroline Newkirk
Director
Coordinated Chronic Disease Prevention and Health Promotion
Mississippi State Department of Health
Jackson, MS

Jean O'Connor
Chronic Disease Prevention Director
Georgia Department of Public Health
Atlanta, GA

Caroline Peck
Chief, Chronic Disease and Injury Control Division
California Chronic Disease Director
Sacramento, CA

Kristi Pier
Director
Center for Chronic Disease Prevention and Control
Maryland Department of Health and Mental Hygiene
Baltimore, MD

Kristen Rego
Director, Health Improvement
Association of State and Territorial Health Officials
Arlington, VA

Sharon Rhyne
Deputy Section Chief, Chronic Disease and Injury (CDI)
North Carolina Division of Public Health
Raleigh, NC

John W. Robitscher
Chief Executive Officer
National Association of Chronic Disease Directors
Atlanta, GA

Kathy Rocco
Chronic Disease Manager
Virginia Department of Health
Richmond, VA

Linda Scarpetta
Division Director
Michigan Department of Community Health
Lansing, MI

Peggy Spaulding
State Unit on Aging
Colorado Department of Human Services
Denver, CO

Sally Steiner
Michigan Aging and Adult Services Agency
Lansing, MI

Lesly Steinman
Research Coordinator
University of Washington
Seattle, WA

Robyn Taylor
Program Coordinator
Ohio Department of Health
Columbus, OH

Pamela Van Zyl York
Program Manager
Minnesota Department of Health
University of Minnesota
Minneapolis, MN

Kaylene Way
Education Coordinator
Alzheimer's Association Chapter of Greater East Ohio
Akron, OH

Rhonda Williams
Chief of Chronic Disease Prevention
Vermont Department of Health
Burlington, VT

Namvar Zohoori
Deputy Chief Science Officer
Arkansas Department of Health
Little Rock, AR

STAKEHOLDER GROUP INTERVIEW: State Programs Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the State Programs Stakeholder Group. [PDF Version]

STAKEHOLDER GROUP PAPER: Final Recommendations on Outcomes that Matter
This report gives a summary of two conference calls the Stakeholder Group held, and a list of the recommendations put forth to the Summit. [PDF Version]

 

SERVICE PROVIDERS

Co-chairs

Sarah Lock
Senior Vice President, Policy
AARP
Washington, DC

Douglas Pace
Director, Mission Partnerships
Alzheimer's Association
Washington, DC
   

Members

Lisa Baron
Executive Director
Memory Care Home Solutions
St. Louis, MO

Ellen Blackwell
Senior Advisor
Centers for Medicare and Medicaid Services
Baltimore, MD

Alice Bonner
Secretary of Elder Affairs
State of Massachusetts
Boston, MA

Malaz Boustani
Professor of Medicine
University of Indiana
Indianapolis, IN

Goldie Byrd
Dean
College of Arts and Sciences
North Carolina Agricultural and Technical State University
Center for Outreach in Alzheimer's, Aging and Community Health
Raliegh-Durham, NC

Kelly Carney
Executive Director, Dementia Care Center
Phoebe Ministries
Allentown, PA

Molly Carpenter
Gerontologist and Caregiver Advocate
Home Instead Senior Care
Omaha, NE

Jennifer Carson
Research Assistant Professor
Community Health Services
University of Reno
Reno, NV

Deke Cateau
Chief Operating Officer
A.G. Rhodes Health and Rehab
Atlanta, GA

Jill Ciglilana
Program Director
Memory Care Home Solutions
St. Louis, MO

Patrick Doyle
Corporate Director of Dementia Care
Brightview Senior Living
Baltimore, MD

Vanessa Emm
National Association of Activity Professionals
Emm Consulting Services
Yerington, NV

Jonathan Evans
Past Chair
AMDA
Charlottesville, VA

Maribeth Gallagher
Dementia Program Director
Hospice of the Valley
Phoenix. AZ

Molly Rees Gavin
President
Connecticut Community Care
Bristol, CT

Matthew P. Janicki
Research Associate Professor
University of Illinois at Chicago/National Task Group
Chicago, IL

Juliet Holt Klinger
Senior Director, Dementia Care
Brookdale Senior Living
Chicago, IL

Neda McGuire
Gerontologist
Comfort Keepers
Washington, DC

Amy McLean
Hospice of the Valley
Phoenix. AZ

Sheila Molony
Associate Professor
School of Nursing
Quinnipiac University
Hamden, CT

Lori Nisson
Director
Banner Alzheimer's Institute
Phoenix. AZ

Henry Pacheco
Former Director, Medicine and Public Health
National Hispanic Council on Aging
Washington, DC

Cathy Piersol
Director, Jefferson Elder Care
Jefferson College of Health Professions
Philadelphia, PA

Lindsay Schwartz
Senior Director, Workforce and Quality Improvement
American Health Care Association
National Center for Assisted Living
Washington, DC

Kelly Smith Papa
Corporate Director of Learning
Masonicare
Wallingford, CT

Nora Super
Chief, Programs and Services
National Association of Area Agencies on Aging
Washington, DC

Teresa Theophano
Assistant Director, Care Management Services
SAGE
New York, NY

Liz Weaver
Project Manager
Dementia Capable Service Expansion
Portland, ME

STAKEHOLDER GROUP INTERVIEW: Service Providers Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Service Providers Stakeholder Group. [PDF Version]

STAKEHOLDER GROUP PAPER: Provider Stakeholder Workgroup Recommendations
This paper outlines the Provider Stakeholder Group recommendations. [PDF Version]

STAKEHOLDER GROUP PAPER: Provider Stakeholder Workgroup Recommendations II
This paper provides accompanying comments for the Provider Stakeholder Group recommendations. [PDF Version]

 

WORKFORCE DEVELOPMENT

Co-chairs

Elyse Perweiler
Rowan University School of Osteopathic Medicine
Co-Director, NJ Institute for Successful Aging
Associate Professor
Department of Geriatrics and Gerontology
Stratford, NJ

Nina Tumosa
Public Health Analyst
Health Resources and Services Administration
Rockville, MD

Joan Weiss
Senior Advisor, Division of Medicine and Dentistry
Designated Federal Official, ACICBL
Health Resources and Services Administration
Rockville, MD

  
   

Members

Daniel A. Bailey
Senior Public Health Analyst
Health Resources and Services Administration
Bureau of Health Workforce
Division of Medicine and Dentistry
Medical Training and Geriatrics Branch
Rockville, MD

Mary Ann Forceia
Division of Geriatric Medicine
University of Pennsylvania Health
Ralston-Penn Center
Philadelphia, PA

Toni P. Miles
Professor, Epidemiology and Biostatistics
College of Public Health
University of Georgia
Athens, GA

Elyse Perweiler
Rowan University School of Osteopathic Medicine
Co-Director, NJ Institute for Successful Aging
Associate Professor
Department of Geriatrics and Gerontology
Stratford, NJ

Susan Tebb
Professor, School of Social Work
College for Public Health and Social Justice
Saint Louis University
St. Louis, MO

Scott A. Trudeau
Productive Aging and Interprofessional Collaborative Practice Program Manager
American Occupational Therapy Association, Inc.
Bethesda, MD

Mary E. Worstell
Public Health Advisor
Office of the Assistant Secretary for Health
U.S. Department of Health and Human Services
Washington, DC

  

STAKEHOLDER GROUP INTERVIEW: Workforce Development Stakeholder Group Interviews
This report is a summary of the interview RTI International conducted with the Workforce Development Stakeholder Group. [PDF Version]

STAKEHOLDER GROUP PAPER: Workforce Gaps in Dementia Education and Training
Workforce was identified by the Summit Steering Committee as one of the key stakeholder groups that should recommend research focus areas for educating and training the workforce. Informal and formal caregivers are an integral part of the dementia care workforce. More broadly, informal caregivers are defined as family members, neighbors, friends, and fictive kin who provide unpaid care, while formal caregivers, covering the spectrum from home health aides to health care professionals, have some training in the care of persons living with dementia and are paid for their services. This paper, written by the Workforce Development Workgroup (WDW), focuses on gaps in educating and training the workforce to address the goals of the Summit. The WDW is an interprofessional team of health professionals from academia, professional organizations, and the federal government with expertise in dementia workforce development. [PDF Version]

 

PAYERS

Co-chairs

Elizabeth Goodman
Chief of Long Term Services and Supports
Executive Office of Elder Affairs and MassHealth
Commonwealth of Massachusetts
Boston, MA

  

STAKEHOLDER GROUP PAPER: Feedback from Health Insurance Companies Regarding Evidence-Based Research for Dementia Care
This paper summarizes feedback from the health insurance community; 10 health insurance companies were contacted and asked to participate in a short survey, 7 agreed to participate. The participating companies include both regional (from several regions of the country) and national health plans. Some offer commercial insurance, and some offer Medicaid products. All offer Medicare Advantage products. At least one of each of the carriers’ Medicare Advantage products is a fully integrated Medicare and Medicaid plan, meaning it covers the full portfolio of Medicare and Medicaid covered services available to members in the state in which the product is offered. As a result, each of the carriers has significant experience serving individuals with dementia and their caregivers. [PDF Version]

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