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 Palliative Care for FTD
Palliative care is specialized medical care for people facing serious illnesses and can be particularly valuable for people with FTD and their families. Its goals are the assessment, management, and, when possible, prevention of illness-related distress, whether physical, spiritual or psychological. Palliative approaches emphasize effective communication and multidisciplinary treatment of symptoms throughout the illness. AFTD…
Symptom Insights: Applying Palliative Care Approaches
Palliative care has its roots in hospice care, which emerged in the 1960s and primarily focused on the needs of patients with cancer.1 In 1990, the World Health Organization recognized palliative care as a distinct specialty focused on relieving suffering and improving quality of life for people with life-limiting illnesses or serious injuries. It identified the…
Care Approaches: Best Practices for Palliative Care
The University of Colorado’s Neurology Supportive and Palliative Care Clinic is another innovative model of palliative care for individuals living with incurable neurological diseases, like FTD and PPA, and their families. This outpatient clinic was founded in 2012 by Dr. Benzie Kluger, an assistant professor of neurology and the chief of the Neurology Supportive and…
A Care Partner’s Perspective: FTD Care Takes a Village
By Sharon Hall, FTD Care Partner “You have frontotemporal degeneration, or FTD. It is a progressive disease, and there are currently no treatments. Get your legal affairs in order.” Hearing these words from a doctor is a gut punch, and it does not get easier from there—I call the first year after my husband’s FTD…
Care Approaches: Palliative Care—Eligibility and Access
Palliative care is specialized and individualized care for people living with a serious medical condition. In FTD, it can be pursued at diagnosis or any point thereafter—unlike hospice, which can only be pursued at the end of life. One can receive palliative care while being treated for other coexisting conditions, and its availability does not…
Case Study: Rethinking Palliative Care—A New Approach to Managing FTD
Palliative care is specialized medical care for people facing serious illnesses. It can be used at any stage of the disease to promote quality of life for both individuals living with FTD and their care partners. (Palliative care during the final stages of a progressive disease is known as hospice care.) Because the use of…
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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
