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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Symptom Insights: Distinguishing Behavioral Variant FTD (bvFTD) from Psychiatric Disorders
Distinguishing behavioral variant FTD (bvFTD), the most common FTD subtype, from psychiatric diagnoses (such as depression, bipolar disorder, or schizophrenia) can be extremely difficult. Many symptoms – disinhibition, apathy, loss of empathy – are common to both bvFTD and certain psychiatric disorders, leading doctors to initially diagnose the latter until a person’s bvFTD gradually reveals…
Interview: Seth L. Stern, MD
Dr. Seth Stern is living with a diagnosis of primary progressive aphasia, a form of FTD that gradually erodes one’s ability to both speak and understand spoken and written language. In May 2023, Dr. Stern, a former obstetrician/gynecologist, told the story of his diagnosis to the Wall Street Journal, which published a feature story about…
Symptom Insights: Understanding FTD Symptoms from a Cultural Context
Biomedical research continues to study factors at the structural, genetic, and molecular levels that contribute to FTD’s wide range of cognitive and behavioral symptoms. More recently, researchers have turned their attention toward understanding how cultural context influences the presentation and perceptions of FTD symptoms. A recent systematic review by two professional interest areas of the…
Care Insights: Reducing Racial Disparities in FTD Research
By Shana Dodge, PhD, AFTD Director of Research Engagement Healthcare disparities among different racial, ethnic, and socioeconomic groups persist and are well-documented.1,2,3 Individuals with dementia who identify as Asian American, Black/African American, or Latine are less likely to receive a prompt diagnosis than those who identify as white due to these racial disparities.4,5,6 The more…
Care Approaches: The Alter Program—Bringing Dementia Education to African American Faith Communities
by Mia Chester, Alter project director, and Fayron Epps, PhD, Alter founder Religion provides hope and a framework to find meaning, especially when navigating difficult life events and transitions; it affirms the sacredness of life and the value of a person, even in the face of loss. Even when one’s health becomes diminished or financial…
Interview: A Discussion with Aisha Adkins and Malcoma Brown-Ekeogu About the Black/African American Experience of FTD
Black/African American families who have shared their stories with AFTD have consistently highlighted difficulties in accessing timely and accurate diagnosis – and that those difficulties represent broader racial disparities in American healthcare. In the following interview, Aisha Adkins and Malcoma Brown-Ekeogu, two Black women and FTD caregivers living in the Atlanta area, talk about aspects…
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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
