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 education initiative is a multi-pronged approach designed to provide a detailed resource for FTD education and support. It will be of value both to family care partners who support loved ones, as well as health professionals working with people living with FTD in residential facilities, day programs and other community-based settings. Developed by a committee of clinical nurse educators, social workers, and family and professional caregivers, with contributions from outside specialists, Partners in FTD Care promotes greater knowledge and understanding of FTD and the development of best care practices.
Two main elements comprise Partners in FTD Care: a regularly published e-newsletter highlighting specific challenges and issues related to FTD care, along with discussion questions and suggested interventions; and additional educational materials that can be used to guide healthcare professional staff in their FTD-specific training.
Partners in FTD Care Newsletters
Each issue of the Partners in FTD Care newsletter presents a case scenario that can be used in staff training.
- Issue #1: Fall 2011: Behavioral Variant FTD
- Issue #2: Winter 2012: Communication Strategies in FTD
- Issue #3: Spring 2012: How to Approach Aggressive Behavior
- Issue #4: Summer 2012: Compulsive Behavior in FTD
- Issue #5: Fall 2012: Primary Progressive Aphasia, Non-Fluent Type
- Issue #6: Winter 2013: Activities for Individuals with FTD
- Issue #7: Spring 2013: In FTD, Roaming is Not Wandering
- What to Do About… Roaming Behavior
- Issue #8: Summer 2013: FTD Symptom or Pain – How Can You Tell?
- What to Do About… Evaluating and Managing Pain
- Issue #9: Fall 2013: When the Meaning is Lost – Semantic Variant PPA
- What to Do About… Managing Symptoms of Semantic PPA
- Issue #10: Winter 2014: It’s Complicated! Incontinence Management in FTD
- What to Do About… Incontinence
- Issue #11: Spring 2014: Why Does He Act Like That? Aggressive Behaviors in FTD
- What to Do About… Aggressive Behavior
- Issue #12: Summer 2014: Sexual Behavior in FTD
- What to Do About… Sexual Behaviors in Facility Care
- Issue #13: Fall 2014: Emotionally Absent: The Loss of Empathy and Connection in FTD
- What to Do About… The Loss of Empathy and Connection in FTD
- Issue #14: Winter 2015: Changes in Eating and Managing Related Compulsive Behaviors
- What to Do About… Hyperoral Behavior
- Issue #15: Summer 2015: Falls and Dysphagia in PSP
- What to Do About… Falls and Dysphagia in PSP
- Issue #16: Fall 2015: Easing the Transition: Residential Long-Term Care and FTD
- What to Do About… Relocation Stress Syndrome
- Issue #17: Winter 2016: Maximizing Communication Success in Primary Progressive Aphasia
- What to Do About… Primary Progressive Aphasia (PPA)
- Issue #18: Spring 2016: FTD When There Are Kids in the Home: Creating a Village of Support
- What to Do About… FTD When There Are Kids in the Home
- Issue #19: Summer 2016: Think Like an Occupational Therapist: The Importance of Individualized Activities in FTD Care
- What to Do About… Activities and Self-Care Routines in FTD
- Issue #20: Fall 2016: Comfort Care and Hospice in Advanced FTD
- What to Do About… Arranging Comfort Care and Hospice in FTD
- Issue #21: Spring 2017: Family Participation in FTD Research
- What to Do About… Facilitating Participation in FTD Research
- Issue #22: Summer 2017: When the Diagnosis Doesn’t Fit: Challenges in Diagnosing FTD
- What to Do About… Challenges in Diagnosing FTD
- Issue #23: Winter 2018: Understanding and Managing Apathy to Improve Care in FTD
- What to Do About… Apathy
- Issue #24: Spring 2018: An Evolving Understanding of ALS with Frontotemporal Degeneration
- Issue #25: Winter 2019: Everything Is Just Fine: Anosognosia in Frontotemporal Degeneration
- Issue #26: Fall 2019: Only Part of the Answer: Medications and FTD
- Issue #27: Winter 2020: Rethinking Palliative Care: A New Approach to Managing FTD
- Issue #28: Spring 2020: I’m Only Trying to Help: Approaches to Resistant Behavior in the Home
- Issue #29: Summer 2020: Life During a Pandemic: FTD Facility Care Amidst COVID-19
- Issue #30: Fall 2020: When the Conversation Stops: Logopenic Variant Primary Progressive Aphasia
- Issue #31: Winter 2021: It May Not Be Parkinson’s: A Look at Corticobasal Degeneration
- Issue #32: Summer 2021: Not Too Young: The Most Common Dementia Under 60
- Issue #33: Winter 2022: Does It Run in the Family?: The Genetics of FTD
- Issue #34: Summer 2022: Finding the Way: Successfully Transitioning to Residential Care
- Issue #35: Fall 2022: For Healthcare Professionals — What Families Need After an FTD Diagnosis
Additional educational materials are provided through Partners in FTD Care. Click the links below to download:
- Case Studies in Frontotemporal Dementia – These case studies highlight different presentations of FTD and suggest interventions for each:
- Changes in Behavior Chart – Developed by Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center, this chart summarizes FTD symptoms and interventions.
- Daily Care Snapshot Tool – This form empowers families to provide accurate information to healthcare professionals, ensuring a smooth transition into a facility or community-based setting.
- Resources List – Where to turn for further information.
Video: It Is What It Is
A documentary short is also a part of Partners in FTD Care. It Is What It Is shows the impact that FTD has on four families. Watch the video here, or order a DVD version, which comes with an information booklet, discussion questions, a special version for trainers, and all of the materials listed above.