Younger Onset Dementia Resources
This page is dedicated to providing support and information for those affected by FTD and younger onset dementia. These types of dementia are often misdiagnosed and present with distinct symptoms, making it challenging to find adequate support and services within the broader dementia community.
Here, you will find a curated collection of resources gathered from leading experts and organizations. Our goal is to empower individuals and families affected by FTD and younger onset dementia by offering access to reliable information, practical advice, and community support. Whether you're seeking guidance on symptoms, caregiving strategies, or navigating healthcare systems, our resources are here to assist you every step of the way.
Explore our comprehensive list of resources and discover how we can support you in understanding and managing FTD and younger onset dementia.
The Association for Frontotemporal Degeneration:
AFTD’s mission is to improve the quality of life for people affected by Frontotemporal Degeneration. They strive to bring awareness to the community and provide support, education, advocacy, and research. On their website, you can find local support groups, resources for the newly diagnosed, guidance for managing care, and legal and financial planning.
Dementia UK:
www.dementiauk.org/information-and-support/young-onset-dementia/
Dementia UK is a specialist dementia nursing charity. They have an entire section of their website dedicated to younger onset dementia. You can find information on diagnosis and next steps, support for children and adolescents of a parent living with younger onset dementia, and an online network of people who have been affected by younger onset dementia.
Learn FTD:
Learn FTD is an educational website. Information includes an overview of FTD, the signs and symptoms, and what it means to receive an FTD diagnosis. They also have several discussion guides for how to approach doctor visits and genetic testing.
Lorenzo’s House:
This non-profit organization was founded by the spouse of someone living with younger onset Alzheimer’s. Lorenzo’s House strives to shift the narrative from isolation and suffering to connection and joy. Their website offers virtual and in-person programs for younger families in need of connection, support, and education.
Remember Me Podcast:
Rachel and Maria were two strangers who were both caring for a parent living with FTD. They connected over this shared experience and created the Remember Me podcast. Together they raise awareness and have fostered a community where people can feel seen and heard. Their podcast episodes are honest, raw, and emotional in the best way and shine a light on what it is like to care for someone living with FTD.