Advisory Groups
Inclusive Engagement
Giving voices to lived experience in dementia caregiving
Central to the design of the PHCOE-DC is a robust engagement process featuring two Lived Experience Advisory Groups (LEAGs, pronounced “leagues”): one representing family caregivers and people living with dementia, and another representing public health agencies and caregiver groups. Their diverse voices directly guide the Center's work.
Public Health
Lived Experience Advisory Group
The Public Health LEAG is composed of public health officials and representatives of other caregiver groups at the state, local and tribal levels.
Its role is to provide:
Advice and guidance on the interventions and best practices that are most appropriate for public health action
Advise our Public Health Center of Excellence on the type of information and resources that would be most useful to public health departments in carrying out activities to support family caregivers of people living with dementia
Caregiver
Lived Experience Advisory Group
This LEAG is a diverse group of family caregivers and people living with dementia. Its goal is to ensure the perspectives and input of those who would be the recipients of public health services and programs are included in the development of these resources.
The group helps shape:
How important information and resources about caregiver support programs are messaged and shared with public health departments in order to best support unpaid caregivers of people living with dementia.
Provides feedback on adaptations of programs to better meet the needs and cultural preferences of diverse caregivers.
“Caregivers and people with lived experience bring so much knowledge, awareness, expertise, and a passion to see things change”
— Person Living with Cognitive Impairment
Frequently Asked Questions
Lived Experience Advisory Group
What is the Public Health Center of Excellence on Dementia Caregiving (PHCOE-DC)?
The goal of the PHCOE-DC is to identify, promote and disseminate promising research findings and best practices that public health agencies can implement to support family members, friends, and other unpaid individuals who care for people living with dementia, including by addressing social determinants of health (e.g. housing, transportation, access to health care, etc.)
What is the role of the LEAGs?
The Lived Experience Advisory Groups (LEAGs) inform the work and activities of our Center by providing input and recommendations on a variety of issues, from public health messaging to program sustainability to cultural adaptation to better meet the needs and priorities of underserved populations.
There are two different groups: the Caregiver LEAG and the Public Health LEAG.
- The Public Health LEAG may advise on whether a program to support dementia caregivers is indicated for broad implementation by a public health agency.
- The Caregiver LEAG may provide feedback on how to effectively message the program to the community to increase its uptake.
Will LEAG members be compensated for their time?
Yes, LEAG members will receive a $500 per year for their commitment and participation.
What type of support is provided to members of the LEAGs?
The project leads will manage all aspects of meeting planning and logistics. In between meetings, the team will regularly communicate via email, phone or video to provide meeting agendas and materials, discussion summaries and answer questions.
How can I submit my interest in joining the LEAG?
Who can I reach out to for more information?
Eve Flippen at ekflippen@alz.org or Elma Johnson at elmabj@umn.edu