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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Symptom Insights: Financial Safety and Anosognosia
Financial supervision early in FTD care is extremely important, particularly when anosognosia is a factor. Mary is a registered nurse and a single mother to two high school sons. After her 50th birthday, she began showing personality changes – formerly helpful and attentive on the job, she became critical and difficult to work with; once…
Care Approaches: Family Caregivers’ Unique Support Needs
An FTD diagnosis presents an overwhelming and ever-changing list of new priorities, limitations, and responsibilities for family caregivers. Research shows that caring for someone with FTD is more expensive and is associated with more health risks than other forms of dementia. (See “The Social and Economic Burden of Frontotemporal Degeneration,” James E. Galvin, et al., Neurology,…
Care Approaches: Positive Approaches and Anosognosia in Residential Facility Care
Without adequate staff preparation, transitioning a person with FTD and anosognosia symptoms into a residential care community can be challenging. Persons with FTD are often young, physically healthy and active, and exhibit a range of cognitive abilities and limitations. Staff familiar with the symptoms of Alzheimer’s disease will meet little success and increased frustration if…
Case Study: Everything Is Just Fine—Anosognosia in Frontotemporal Degeneration (FTD)
Caring for people with FTD presents challenges no matter what. Anosognosia can make it even more difficult. Anosognosia is the inability to recognize or perceive one’s illness and its associated limitations. Also referred to as “lack of insight,” anosognosia is a hallmark symptom of FTD, especially in behavioral variant FTD. People who present with anosognosia…
Symptom Insights: Psychiatric Admissions in Anosognosia
“There is nothing wrong with me.” This is a common response by persons with FTD and anosognosia symptoms after being presented with the possibility of an evaluation or care intervention. They can further become angry and disinhibited, which, combined with impaired judgment, presents a potential safety risk to family members, health professionals, and themselves. Admission…
Symptom Insights: Behavioral Anosognosia Complicates Diagnosis, Care and Family Relationships
People with FTD will vary in their capacity for self-awareness or insight. Some people may experience cognitive unawareness, reflected in difficulties with memory, language, spatial and temporal orientation, calculation, abstract reasoning, and applying abstract ideas in practice. People with behavioral unawareness, meanwhile, become impulsive, have little understanding of safety, and tend to be more narcissistic….
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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
