Central to the design of the PHCOE-DC is a robust engagement process that incorporates the voices and perspectives of a diversity of interest groups, representatives and advocates. The Center features two Lived Experience Advisory Groups (LEAG): People Living with Dementia and Family Caregiver LEAG and Public Health Agencies and Caregiver Groups LEAG.
LEAG is the new name for our Stakeholder Engagement Advisory Groups (SEAGs), and was adopted in response to feedback we received from community members and other partners about the term “stakeholder”. This term, which is widely used across public health, may be inappropriate, harmful, and disrespectful to many populations due to historical contexts.
In an effort to be as welcoming and inclusive as possible, we have decided to replace the name SEAG with LEAG (pronounced like “league), which stands for Lived Experience Advisory Group. This new term puts the ultimate recipients of all of our efforts, caregivers and people living with the disease, at the forefront. The LEAGs will continue the same great work as before and we hope that this new name demonstrates our commitment to inclusivity and respect.
Public Health Agencies and Caregiver Groups LEAG
The Public Health Agencies and Caregiver Groups 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
People Living with Dementia and Family Caregiver LEAG
The People Living with Dementia and Family Caregiver 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
FREQUENTLY ASKED QUESTIONS
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 Public Health Center of Excellence 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: People Living with Dementia and Caregiver LEAG and the Public Health Agencies and Caregiver Group LEAG.
Specific duties for each LEAG could include:
- The Public Health Agencies and Caregiver Groups LEAG might advise on whether a program to support dementia caregivers is indicated for broad implementation by a public health agency
- The People Living with Dementia and Family/Informal Caregiver LEAG provides feedback on how to effectively message the program to the community to increase its uptake
What is the expected time commitment?
LEAG members will be expected to participate in an initial meeting in late July/early August and subsequent meetings over the next year. Each meeting will last approximately 1-1.5 hours.
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?
The People Living with Dementia and Caregiver LEAG interest form can be submitted here. The Public Health Agencies and Caregiver Group LEAG interest form can be submitted here.
Who can I reach out to for more information?
Chelsea Kline at crkline@alz.org or Elma Johnson at elmabj@umn.edu
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Is your agency ready to implement dementia caregiving programming but unsure what public health strategy would be most effective? Do you need help adapting an existing program to diverse caregiver groups? Whatever your needs are, we are here to help you support dementia caregivers in your community.