Transforming Life with Dementia
At the National Council of Dementia Minds, we believe people living with dementia should guide the way forward.
Download the Full Report HereOur Transforming Life With Dementia needs analysis report shares our real-life experiences and identifies what’s working—and what’s not working—in the services and supports people receive after a dementia diagnosis. It offers practical recommendations to help transform the diagnosis experience into one that is grounded in support, understanding, and empowerment.
From this page, you can access three different versions of the report:
• A full version of the report with lots of photos and visual elements
• An “easy-read” version with large-print text only
• A companion document listing all 131 of our verbatim recommendations
Watch his video to discover why the National Council of Dementia Minds launched our groundbreaking Transforming Life with Dementia research project—and what we learned.
How We Arrived at These Recommendations
We hope this report helps families, professionals, and policymakers better understand what truly matters after a diagnosis and use that insight to strengthen systems of support for people living with dementia.
Thanks to generous grant funding from the Michigan Health Endowment Fund, the National Council of Dementia Minds conducted extensive research in 2023 and 2024 to better understand—and clearly convey—what people living with dementia need after receiving a diagnosis.
Working as co-researchers alongside academic partners, members of NCDM reviewed the existing post-diagnosis support landscape and shared our lived experiences to identify gaps and shortcomings in the resources and services available. We focused especially on the critical first year following a dementia or mild cognitive impairment diagnosis.
Our analysis resulted in 131 recommendations addressing gaps across six key areas: stigma, social, emotional, medical, financial, and legal. We then prioritized and organized these recommendations into the clear, actionable steps that you’ll find throughout the report.
We hope this report helps families, professionals, and policymakers better understand what truly matters after a diagnosis and use that insight to strengthen systems of support for people living with dementia.
Use of Our Resources
The resources on this website are copyrighted by National Council of Dementia Minds (NCDM) with all rights reserved, unless otherwise noted. Content may be downloaded, reproduced, or disseminated without change and in its entirety, either for personal use or by nonprofit organizations for educational purposes—provided that attribution is made to National Council of Dementia Minds. To request permission to use resources from this website in any other way, send an email describing the intended use and your contact information to [email protected].
Support with a Donation
If you find our resources helpful, please consider supporting us with a donation.