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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From a Caregiver’s Perspective: Deciding to Learn One’s Genetic Status
by A. Parker FTD runs in my father’s side of the family. My paternal grandmother almost certainly had it, although she was never officially diagnosed. But three of my father’s four siblings had FTD, and so did my father, who displayed symptoms starting in his 40s before dying in 2009 at age 60. Before my…
Care Approaches: Providing Support to Those Considering Genetic Testing—Guidance for Healthcare Professionals
For many people facing potential FTD caused by a genetic variant, either for themselves or a family member, deciding to undergo genetic testing can be complicated and challenging. The decision to know (or not know) one’s genetic FTD status can feel overwhelming, and invariably comes at an already vulnerable time in one’s life. Families should…
Case Study: Does It Run in the Family?—The Genetics of FTD
Most cases of FTD are sporadic, meaning that there is no clear-cut, singular genetic cause. Many cases, however, are said to be familial: Neurodegenerative diseases such as ALS, Parkinson’s, and FTD recur throughout the family tree. A variety of factors can contribute to a family’s propensity for developing FTD, but the most direct cause is…
Disease Insights: The Role of Genetics in FTD—An Overview
Frontotemporal degeneration (FTD) is a group of disorders caused by the degeneration of the frontal and/or temporal lobes of the brain, bringing progressive changes to behavior, personality, language, and/or movement. The FTD disorders occur when specific proteins accumulate and clump together in a person’s neurons. Three such proteins have been identified: tau, TDP-43, and FUS….
AFTD Resource: What to Do About the Decision to Learn One’s Genetic FTD Status
Deciding whether to learn if one has a gene variant that will someday lead to genetic FTD can be overwhelming. Fortunately, there are knowledgeable genetic counselors who can provide information, guidance, and resources to make that decision a little easier. The AFTD resource linked below can help healthcare professionals and families navigate the decision-making process…
AFTD Resource: What to Do About FTD, the Most Common Dementia Under 60
Frontotemporal degeneration is most commonly diagnosed between the ages of 45 and 64 and is the most common dementia under 60. Since most people—including healthcare professionals—rarely suspect dementia in people that young, securing a diagnosis can be extremely difficult. After diagnosis, younger people and their caregivers face unique challenges, particularly in financial management, ensuring safety,…
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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
