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 Insights: Developing a Person-Centered FTD Care Team and Plan of Care
Successful FTD care for people living with the disorder in a facility setting begins with staff education. This includes training on a broad range of FTD topics, starting from “what is it?” and then covering FTD subtypes, causes, and symptoms; the needs of persons diagnosed; approaches to care; and successful interventions. Ongoing staff and family…
Care Insights: Families and Community Care Staff—Working Together to Achieve Person-Centered FTD Care
By Sandra Grow, RN During a loved one’s transition to a residential facility or community care, most family caregivers will want and expect that the care they receive is as individualized and person-centered as the care they provided for years at home. In FTD this can be particularly challenging. To achieve this goal, family caregivers…
AFTD Resource: Behavioral Symptoms of FTD
The FTD symptoms that family caregivers find most challenging are often the drivers to pursue facility-based care. To help facility staff provide person-centered FTD care, this article will focus on some of the most challenging behavioral symptoms. While the behaviors listed below are more common in those diagnosed with behavioral variant FTD (bvFTD), they can…
Care Approaches: Tips for Residential Care Staff to Create a Smooth Transition
by Jennifer Pilcher, PhD The successful transition for any resident with dementia into a new living environment can be challenging, necessitating thorough assessment, planning, attention, and communication. This is particularly true in FTD, a disease whose symptoms are less well understood by most residential care providers. The younger age of onset compared with other dementias…
Case Study: Finding the Way—Successfully Transitioning to Residential Care with FTD
For families facing FTD, the decision to transition into a residential care facility is often a challenging one, fraught with emotional stress and logistical concerns. But steps can be taken by facility staff to ease that transition. Employing a person-centered, individualized care plan, combined with creative problem-solving and careful collaboration, can achieve a care transition…
Care Approaches: What to Know Before Ordering Genetic Testing
FTD is a progressive, terminal neurological disease with no FDA-approved treatments. Because of the seriousness of the condition and the potential implications for extended family members, particular care and consideration need to be given to the emotional, privacy, and legal/financial needs of the person receiving genetic testing. Asymptomatic family members of persons diagnosed with FTD…
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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
