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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AFTD Resource: What to Do About Apathy
Apathy in FTD can be present at all stages of the disease, affecting a range of everyday activities, including social engagement, household tasks and self-care. The person with FTD may know what they want to do, but have trouble carrying it out due to impairment in initiation, planning and motivation — all functions supported by…
Symptom Insights: Two Views of Apathy
My Perspective as a Person Diagnosed The truth is, I burn up tremendous amounts of energy to maintain a thin veneer of normalcy. My family knows that my life is not normal, and I am aware to some degree on how changes in behavior, attitude, and affect have impacted my family, When I get organized,…
Care Approaches: The Mutual Benefits of a Structured Day
One Caregiver’s Approach Eleanor and Richard had retired early to travel, spend time with their grandchildren and do more volunteering in their community. Those plans took a drastic turn when Richard’s behavior became increasingly peculiar. When a neurologist diagnosed Richard with FTD, Eleanor became determined to make the most of each moment through a structured…
Care Approaches: Designing Interventions For Apathy
Designing interventions based on the specific nature of a person’s apathy can increase goal-directed activity. The closer the fit between the reason for inactivity and the intervention, the greater the effectiveness of the intervention. Individuals with initiation difficulty may benefit from Multi-Sensory Stimulation (MSS), a therapeutic approach that provides visual, auditory, tactile and olfactory stimulation,…
Symptom Insights: Components of Apathy
The concept of goal-directed behavior provides a useful model for examining the mechanisms underlying apathy. Three distinct components of goal-directed behavior are initiation, planning, and motivation. A distinct region of the frontal lobe supports each. Apathy may emerge when there is dysfunction in any one of these components; understanding them may help care providers and…
Case Study: Understanding and Managing Apathy to Improve Care in FTD
Apathy is one of the most common symptoms of frontotemporal degeneration (FTD), especially the behavioral variant (bvFTD). Best understood as a decline in goal-directed behavior, apathy is associated with a range of undesirable consequences, including accelerated functional decline and even mortality. Deficits observed in apathetic patients include poor planning, poor motivation and the inability to…
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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
