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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Understanding and Responding to FTD Behaviors
Behavioral symptoms associated with FTD often present significant challenges, not only for the individual diagnosed but also for their care partners. FTD behaviors, such as disinhibition, apathy, compulsivity, or loss of empathy, can be difficult to manage and frequently lead to heightened caregiver stress and burnout. As the disease progresses, many families are faced with…
Partners in FTD Care: Genetic FTD Trials Update – Approaching a Phase 3 Milestone
The FTD research landscape is on the verge of major developments. For the first time, a Phase 3 trial has been completed for a potentially disease-modifying treatment for genetic FTD, with results expected in the coming months, and a number of other trials are in the pipeline. As the data readout for this study approaches,…
The Road to Timely and Accurate FTD Diagnosis
Accurate, early FTD diagnosis is crucial – for appropriate care, improved quality of life and disease management, adequate support for caregivers, better informed decisions around family planning, and access to clinical trial participation. But because FTD comprises a group of disorders, many of whose symptoms overlap with other neuropsychiatric and neurodegenerative conditions, FTD can be…
Partners in FTD Care – A Lack of Empathy and Emotional Connection: A Common Symptom of FTD
Providing care for someone living with a condition as complex as FTD poses physical and mental challenges to both professional and family caregivers. In many cases, maintaining a fond emotional connection with the person diagnosed can offer small moments of joy, lightening the strain and stress of caregiving with spontaneous shared smiles, laughter, or hugs….
Partners in FTD Care: Bridging the Gap Between FTD and ALS
FTD lies at the genetic and symptomatic intersection of a number of neurodegenerative disorders. One of them is amyotrophic lateral sclerosis (ALS). A variant in the C9orf72 gene is the most common cause of both genetic FTD and ALS, and both FTD and ALS can present within the same family, or even in the same…
Partners in FTD Care: Identifying and Describing Communication Difficulties Across the FTD Spectrum
Communication is a cornerstone of human interaction, enabling the exchange of ideas, the formation of connections, and the capacity to engage with new information. At its core, communication begins with the intent of sharing a thought or idea with another person. This intent is translated into language, a structured system of symbols and rules used…
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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
