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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Case Study: An Evolving Understanding of ALS with FTD
Amyotrophic lateral sclerosis (ALS), also called “Lou Gehrig’s disease,” is caused by the death of motor neurons, nerve cells that control voluntary muscles. Doctors and researchers are increasingly recognizing that many people with ALS also experience cognitive changes consistent with FTD. Indeed, as many as half of those with ALS exhibit behavioral changes or a…
Troubles & Tips: What to Do About ALS with FTD
Over the last ten years, there has been increasing recognition of a continuum between ALS and frontotemporal degeneration (FTD). Up to half of people with ALS also show symptoms of FTD, while up to 30% of people diagnosed with FTD develop motor symptoms consistent with ALS. People diagnosed with either ALS or frontotemporal degeneration (FTD)…
A Caregiver’s Perspective…on Slow-Developing ALS with FTD
by Miki Paul, PhD, psychologist, former caregiver of husband who had ALS with FTD, and facilitator of the AFTD phone support group for caregivers of loved ones who have ALS with FTD I lost my husband years before I lost him. Chuck and I were living our dream life, spending weekends at our cabin with…
Disease Insights: A Genetic Perspective on ALS and FTD
Approximately 40% of affected individuals with FTD have a family history that includes at least one other relative diagnosed with a neurodegenerative disease. Their FTD is said to be familial, or hereditary. Hereditary FTD is caused by harmful gene mutations that affect proteins essential to the normal functioning and survival of brain cells. In FTD,…
Symptom Insights: Common Presentations of ALS with FTD
ALS can present in myriad ways, with weakness in any segment of the body. Roughly 75% of patients present with limb weakness, 25% present with bulbar weakness (trouble speaking or swallowing), and a small number present with respiratory insufficiency. Similarly, FTD can manifest early on as a predominantly behavioral syndrome or as a disorder of…
Disease Insights: FTD and ALS, A Shared Genetic Mutation
The discovery in 2011 that the C9orf72 genetic mutation can cause both frontotemporal degeneration (FTD) and amyotrophic lateral sclerosis (ALS) has transformed a long-held belief that ALS is purely a neuromuscular disorder and that FTD is purely a cognitive or behavioral form of dementia. It is now recognized that the C9orf72 gene is the most common gene…
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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
