FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.
Partners in FTD Care
AFTD’s Partners in FTD Care is developed by a committee of clinical nurse educators, social workers, and family and professional caregivers, with contributions from outside specialists to promote greater knowledge and understanding of FTD and share best care practices.
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Care Approaches: Employee Burnout and the Value of a Staff/Caregiver Partnership
For health care professionals providing FTD care during this time, it is important to recognize the difficulties COVID-19 poses for persons diagnosed and their families. Practicing open and honest communication is crucial, as fostering a sense of trust will help to ensure all parties feel informed, supported, and heard, and can lead to conversations that…
It’s OK Not to Be OK: Dealing with Grief and Loss Amid FTD and COVID
You have chosen an incredibly meaningful line of work, which not only supports persons diagnosed with FTD but also their families. While it is truly an honor to be part of the care and treatment of the families you serve, it can also take an emotional, physical, and spiritual toll, especially during this highly demanding…
Care Approaches: COVID Preparedness and Facility Care
For families navigating an FTD diagnosis, the decision to move a loved one into a long-term care (LTC) facility can be made even more difficult by the COVID-19 pandemic, as recently addressed by Carmela Tartaglia, MD, FRCPC, of the University of Toronto, in a letter published on AFTD’s website. When helping families prepare for long-term care,…
Case Study: Life During a Pandemic—FTD Facility Care Amidst COVID-19
Across the U.S., long-term care facilities have emerged as hotspots for the spread of COVID-19, significantly disrupting their usual routines. For people living with FTD who are in such facilities, measures taken to control the virus can be profoundly confusing, isolating, and anxiety-making, particularly as the circumstances around the pandemic change on a near-daily basis….
AFTD Resource: What to Do About Managing Resistant Behaviors
Persons diagnosed with frontotemporal degeneration (FTD) may resist family members or healthcare professionals who attempt to provide care or take steps to ensure their safety (for example, by hiding their car keys or removing weapons from the house). Care-resistant behaviors are relatively common in FTD, a result of numerous symptoms that characterize the disease, including…
Care Approaches: Additional In-Home and Community-Based Care Options for Resistant Behavior
Having to manage the resistant behaviors of a person with FTD can directly impact the health and well-being of both the person diagnosed and their caregiver. Caregivers must feel as safe and healthy—both physically and mentally—as possible in order to properly tend to the well-being of the person with FTD. Having additional in-home care and…
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- Bridging the Gap Between FTD and ALS (April 2025)
- Detecting and Diagnosing FTD (Winter 2023)
- It May Not Be Parkinson’s: A Look at Corticobasal Degeneration (Winter 2021)
- Not Too Young: The Most Common Dementia Under 60 (Summer 2021)
- When the Conversation Stops: Logopenic Variant Primary Progressive Aphasia (Fall 2020)
- An Evolving Understanding of ALS with Frontotemporal Degeneration (Spring 2018)
- Maximizing Communication Success in Primary Progressive Aphasia (Winter 2016)
- Falls and Dysphagia in PSP (Summer 2015)
- When the Meaning is Lost – Semantic Variant PPA (Fall 2013)
- Primary Progressive Aphasia, Non-Fluent Type (Fall 2012)
- Behavioral Variant FTD (Fall 2011)
- A Lack of Empathy and Emotional Connection: A Common Symptom of FTD (June 2025)
- Identifying and Describing Communication Difficulties Across the FTD Spectrum (February 2025)
- The Heterogeneity of FTD (December 2024)
- I’m Only Trying to Help: Approaches to Resistant Behavior in the Home (Spring 2020)
- Only Part of the Answer: Medications and FTD (Fall 2019)
- Everything Is Just Fine: Anosognosia in Frontotemporal Degeneration (Winter 2019)
- Understanding and Managing Apathy to Improve Care in FTD (Winter 2018)
- Changes in Eating and Managing Related Compulsive Behavior (Winter 2015)
- Emotionally Absent: The Loss of Empathy and Connection in FTD (Fall 2014)
- Sexual Behavior in FTD (Summer 2014)
- Why Does He Act Like That? Aggressive Behaviors in FTD (Spring 2014)
- It’s Complicated! Incontinence Management in FTD (Winter 2014)
- In FTD, Roaming is Not Wandering (Spring 2013)
- Compulsive Behavior in FTD (Summer 2012)
- How to Approach Aggressive Behavior (Spring 2012)
- Communication Strategies in FTD (Winter 2012)
- The Road to Timely and Accurate FTD Diagnosis (August 2025)
- Connect, Learn, Engage: AFTD's 2024 Education Conference (Spring 2024)
- Black/African Americans and FTD (Summer 2023)
- Connect, Learn, Engage: AFTD's 2023 Education Conference (Spring 2023)
- For Healthcare Professionals — What Families Need After an FTD Diagnosis (Fall 2022)
- Finding the Way: Successfully Transitioning to Residential Care (Summer 2022)
- Does It Run in the Family?: The Genetics of FTD (Winter 2022)
- Not Too Young: The Most Common Dementia Under 60 (Summer 2021)
- Life During a Pandemic: FTD Facility Care Amidst COVID-19 (Summer 2020)
- Rethinking Palliative Care: A New Approach to Managing FTD (Winter 2020)
- When the Diagnosis Doesn’t Fit: Challenges in Diagnosing FTD (Summer 2017)
- Family Participation in FTD Research (Spring 2017)
- Comfort Care and Hospice in Advanced FTD (Fall 2016)
- Think Like an Occupational Therapist: The Importance of Individualized Activities in FTD Care (Summer 2016)
- FTD When There Are Kids in the Home: Creating a Village of Support (Spring 2016)
- Easing the Transition: Residential Long-Term Care and FTD (Fall 2015)
- FTD Symptom or Pain – How Can You Tell? (Summer 2013)
- Activities for Individuals with FTD (Winter 2013)
Educational Materials
- Changes in Behavior Chart summarizes FTD symptoms and interventions.
- AFTD's resource on Managing Aggressive Behavior in FTD
- Resources List
