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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A Care Partner’s Perspective: The Importance of Support in Addressing Resistant Behaviors
by Sandra Grow, RN, former FTD care partner and current AFTD Board member My husband was diagnosed with FTD at the age of 54. As his caregiver, I sought out a support network to help deal with the progression of the disease, and along the way, became a support group volunteer to help the families…
Care Approaches: Strategies to Maintain Safety When Resistant Behaviors Arise
Resistant behaviors in FTD can seem unpredictable, but are usually the result of a person diagnosed responding to a trigger. Triggers can range from a confusing instruction or request, an unfamiliar environment or location, an encroachment on their personal space, pain or discomfort, and many more. To prevent stressful and potentially dangerous situations, both in…
Symptom Insights: The Importance of Recording Resistant Behaviors
Caring for someone with FTD can be extremely challenging. Common FTD symptoms, such as confusion, loss of control, and lack of awareness, can manifest as resistant behaviors that make caregiving even more difficult. The first step to managing these behaviors is to record them as they happen. By using a calendar to note the day,…
Care Approaches: Optimizing Medications for Difficult Behaviors in FTD
by Nansi Gregor-Holt, RN, MPH, MSN Care-resistant behavior, often caused by distress, is a common symptom of FTD. And since many with FTD are younger in age, they can be quite strong physically; as a result, resistant behaviors can put them and their care partners at a greater risk of harm. A medical evaluation is…
Symptom Insights: Combatting COVID-19 When FTD Causes Hand-Washing Resistance
As the country continues to grapple with the COVID-19 pandemic, handwashing and hygiene are more important than ever. But when persons with FTD exhibit resistant behaviors, ensuring appropriate hygiene measures can become a challenge for care partners. To ensure safety in the home for both individuals diagnosed and their care partners, it is essential to…
Case Study: I’m Only Trying to Help—Approaches to Resistant Behavior from FTD in the Home
In FTD, resistant behaviors occur when the person diagnosed resists the efforts of a caregiver to help them with activities of daily living, including bathing, toileting, dressing, eating, and administering medication, among others. Resistant behaviors may present in a subtle manner or can be accompanied by displays of force and even violence against the caregiver….
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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
