Creating a Care Team

Frontotemporal dementia (FTD) and FTD related disorders can cause a wide range of symptoms and therefore can create unique challenges to daily life. Attempting to take on these challenges on your own can feel overwhelming, and it can be difficult to know where to turn for support. We encourage individuals with an FTD diagnosis and their loved ones to establish a care team early in their journey to proactively establish a supportive network of both health care professionals and your non-clinical community. This brings us to three important questions:

1.What is a care team? 

A care team traditionally is a group of health care professionals who each support a patient through their specialized training and expertise. For example, a neurologist may be able to provide a diagnosis and prescribe medication or interpret MRI scans, while a neuropsychologist may be able to provide deeper insight into which cognitive functions someone is having difficulty with and ways to manage this. A social worker can connect the family with resources in their community, while a genetic counselor can counsel and educate the family to better understand genetic risk. However, we recognize that symptom management extends far beyond the clinic in the context of FTD and therefore recommend including personal relationships such as family, friends or community members in your care team as well, as they can provide invaluable physical and emotional support.

2.Why is this important?

We don’t want you to navigate this journey alone! Establishing this team early in a diagnosis is important so you have support and guidance as needs evolve. FTD can vary greatly from person to person and from year to year, so a care team should also be highly individualized, meaning there is no one-size-fits-all formula that will meet everyone’s needs. By including a wide range of expertise, you can feel confident that all aspects of a person’s FTD journey are being addressed in a comprehensive way. At the FTD Center, we are happy to coordinate care with other clinicians or provide education if someone is less familiar with the diagnosis. Our ultimate goal is to support and advocate for the individual with FTD and their care partners to ensure the best possible quality of life for all.

3.Who can I ask for help?

We’ve included a non-exhaustive list below of members that might be included in an FTD Care Team. 

Clinical Team Members	Non-Clinical Team Members
- Neurologist  - Nurse practitioner or nurse  - Social worker  - Genetic Counselor  - Psychiatrist   - Neuropsychologist  - Physical, occupational and speech therapists  - Primary care provider   - Psychotherapist or counselor  - Home health care or palliative care team  - Assisted living care team	- Primary caregiver: often spouse, child, sibling, friend  - Neighbors, friends, religious groups  - Community groups: adult day centers, senior living groups  - FTD Support Groups  - The Association for FTD, CurePSP, Lewy Body Dementia Association, Alzheimer’s Association  - Elder care attorney or financial advisor

~ Gillian Bradley MA, BSN, RN Clinical Research Nurse