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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Care Approaches: Living Alone with CBD—Balancing Autonomy and Risk
by Mary O’Hara, LCSW While living alone in early corticobasal degeneration (CBD) may be possible, it will eventually stop being a safe option as the disease advances. Progressive impairments in walking, motor skills, thinking, language, balance, judgment, swallowing and the ability to plan and carry out activities combine to prevent persons diagnosed from adequately tending…
Case Study: It May Not Be Parkinson’s: A Look at Corticobasal Degeneration (CBD)
Corticobasal degeneration (CBD) is a rare neurodegenerative disorder characterized by the loss of nerve cells, scarring, and atrophy of the deeper layers in the brain’s frontal and parietal lobes. (Corticobasal syndrome, meanwhile, is its most common presentation based on the pathological symptoms.) Due to their similar presentations, CBD often is initially diagnosed as Parkinson’s disease….
AFTD Resource: What to Do About Managing Logopenic Variant PPA (lvPPA)
The logopenic variant of primary progressive aphasia (lvPPA) presents a unique set of challenges for persons diagnosed, care partners, and health care professionals. As language skills decline, both the person diagnosed and those around them will need to exercise patience as they develop compensatory strategies. The AFTD Resource below can guide care professionals and others…
From a Caregiver’s Perspective: The Importance of Speech and Language Therapy in PPA
by Barb Murphy For people living with PPA, speech and language therapy can help slow the decline of language ability and compensate for losses over time. For my husband Gary, diagnosed with PPA five years ago, speech and language therapy has had a tremendous impact. Our decision to participate in Northwestern University’s Communication Bridge Clinical…
From a Caregiver’s Perspective: Music Therapy and Language Retention in PPA
by Gary Eilrich Soon after retiring, I noticed my wife was having trouble expressing herself. Our primary care physician suggested an appointment with a behavioral neurologist, and after an evaluation and neuropsychological testing, she was diagnosed with primary progressive aphasia (PPA). She soon began attending speech therapy sessions, which she enjoyed; she was diligent about…
Disease Insights: PPA Subtyping—Helping or Hindering the Understanding of PPA?
by Emily Rogalski, PhD One of the most confusing topics for PPA caregivers, clinicians, and researchers studying the condition has been the nomenclature associated with it. PPA subtyping—delineated as agrammatic, semantic, and logopenic subtypes—vary in clinical features and tend to have different patterns of brain atrophy, as well as different probabilistic relationships with underlying pathology….
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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
