Advisory Groups
Inclusive Engagement
Giving Voice to Diverse Perspectives in Dementia Caregiving
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.
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 & Caregiver Groups
Lived Experience Advisory Group
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
Family Caregivers & People Living With Dementia
Lived Experience Advisory Group
The group helps shape:
Frequently Asked Questions
What is the Public Health Center of Excellence on Dementia Caregiving (PHCOE-DC)?
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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?
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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
Will LEAG members be compensated for their time?
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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?
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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?
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The Family Caregivers & People Living with Dementia LEAG interest form can be submitted here. The interest form for the Public Health Agencies and Caregiver Groups LEAG can be submitted here.
Who can I reach out to for more information?
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Cat Colcombe at cwcolcombe@alz.org or Elma Johnson at elmabj@umn.edu