Noticing and adapting to changes in memory, thinking, behavior, or everyday abilities can be challenging. Care Roadmaps offer resources to help families and caregivers decide what to focus on now and prepare for what may come next.
Start with these five steps
Reach out
Connect with people who can help. If you’re not sure where to start, call the Alzheimer’s Association 24/7 Helpline at 1-800-272-3900.
Keep good records
Organize important information and keep it easy to find when you need it.
Prioritize what matters
Focus on what is within your control. Take one step at a time, and learn as you go.
Be gentle with yourself
Caregiving can be difficult. You will not always know what to do. Practice kindness toward yourself and others.
Plan ahead
Prepare for care decisions before they become urgent. Free tools such as Prepare for Your Care and Plan for Clarity can help you start planning.
Explore the FTD Care Roadmap
The UCSF Edward and Pearl Fein Memory and Aging Center, part of the UCSF Weill Institute for Neurosciences, developed the Frontotemporal Dementia (FTD) Care Roadmap through a collaboration initiated by caregiver and advocate Emma Heming Willis. The Roadmap helps families and caregivers find practical information and resources as needs change.
Using the FTD Care Roadmap
The FTD Care Roadmap is designed to help caregivers and family members find information when they need it and when they are ready for it. You do not need to take in everything at once. Start with what feels most important now, learn at your own pace, and return to other topics as questions and needs arise.
The illustrated Roadmap covers six areas: Support Team, Learn About FTD, Safety and Finances, Community Resources, Care for the Caregiver, and Stay Active. QR codes connect each area to more detailed information and resources online.
The back of the printed Roadmap includes a worksheet for keeping essential information close at hand, including contacts for family members, health care providers, legal decision-makers, pharmacies, insurance, support services, and emergency resources.
A model for other dementia care programs
The Fein Memory and Aging Center designed the Care Roadmap not only as a resource for families receiving care at UCSF, but also as a framework that other dementia care programs can adapt for their communities.
Care Roadmaps combine practical guidance with an illustrated format designed to feel approachable and worth keeping nearby. Organizations can use the six core areas as a consistent framework while tailoring content, resources, links, and artwork for the people they serve. Working with local artists can help each Roadmap reflect its community and bring warmth to information that can otherwise feel overwhelming.
This approach gives Care Roadmaps a common structure without making them one-size-fits-all. The FTD Care Roadmap is the first version of this model. Additional Care Roadmaps, including a Brain Health Roadmap, are planned.
Organizations interested in offering a Care Roadmap have two options:
Use the UCSF FTD Care Roadmap as a model to develop a Roadmap tailored to the people you serve. Adapt the content, resources, links, and artwork while using the six core areas as a consistent framework.
Use a ready-to-use Care Roadmap template from the Association for Frontotemporal Degeneration (AFTD).