Lived-experience leadership
Creating respectful ways for people affected by dementia to shape priorities and public messages.
Our priorities
A stronger public voice
Advocacy
Elevating lived experience and credible evidence to encourage more dementia-inclusive communities, equitable support, and sustained public attention.
In development
IDCC is building this area thoughtfully with qualified partners and people whose lives are affected by dementia.
Our approach
Purposeful work, shaped by evidence and lived experience.
Advocacy helps turn private challenges into shared priorities. It can improve public understanding, reduce stigma, strengthen services, and encourage investment in both care and research.
IDCC plans to pursue nonpartisan, mission-focused advocacy grounded in evidence and the voices of people living with dementia and care partners. We will communicate clearly about needs, promising approaches, and the consequences of inaction without overstating what any single policy can achieve.
What we will focus on
Four commitments guiding this priority.
Each focus area will be developed with clear objectives, appropriate expertise, and meaningful community input.
Public understanding
Replacing fear and stigma with accurate information, practical action, dignity, and hope.
Equitable access
Calling attention to geographic, cultural, financial, language, and workforce barriers.
Care and research investment
Making the case for sustained support across caregiving, community services, workforce development, and science.
Programs we are shaping
Building the foundation before the launch.
These initiatives are planned concepts, not yet active services. Their design, timing, and scope will depend on expert review, partnerships, community input, and funding.
Listening sessions
Structured conversations that surface lived priorities and community-level barriers.
Issue briefs
Concise, evidence-informed explanations of selected care and research challenges.
Public awareness initiatives
Hopeful communications that make dementia more understandable and communities more responsive.
Coalition participation
Collaboration with aligned organizations when shared action can add meaningful value.
Who this work is for
Designed around people, not programs.
People living with dementiaCare partnersCommunity leadersPublic agenciesHealth and care organizationsFunders and civic partners
Build this with us
Partnership makes the work stronger.
We welcome nonpartisan organizations, advocates, professional associations, and community leaders interested in listening, learning, and advancing shared dementia-care priorities.
Trusted starting points
Explore authoritative resources.
While IDCC develops its own reviewed materials, these public resources offer credible information and pathways for learning.
IDCC does not provide medical diagnosis or treatment. Information on this site is educational and does not replace advice from a qualified professional.
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