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.
To subscribe: send an email to PartnersinFTDCare@theaftd.org.
- 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
- Issue #8: Summer 2013: FTD Symptom or Pain – How Can You Tell?
- Issue #9: Fall 2013: When the Meaning is Lost – Semantic Variant PPA
- Issue #10: Winter 2014: It’s Complicated! Incontinence Management in FTD
- Issue #11: Spring 2014: Why Does He Act Like That? Aggressive Behaviors in FTD
- Issue #12: Summer 2014: Sexual Behavior in FTD
- Issue #13: Fall 2014: The Loss of Empathy and Connection in FTD
- Issue #14: Winter 2015: Changes in Eating and Managing Related Compulsive Behaviors
- Issue #15: Summer 2015: Falls and Dysphagia in PSP
- Issue #16: Fall 2015: Easing the Transition: Residential Long-Term Care and FTD
- Issue #17: Winter 2016: Maximizing Communication Success in Primary Progressive Aphasia
- Issue #18: Spring 2016: FTD When There Are Kids in the Home: Creating a Village of Support
- Issue #19: Summer 2016: Think Like an Occupational Therapist: The Importance of Individualized Activities in FTD Care
- Issue #20: Fall 2016: Comfort Care and Hospice in Advanced FTD
- Issue #21: Spring 2017: Family Participation in FTD Research
- Issue #22: Summer 2017: When the Diagnosis Doesn’t Fit: Challenges in Diagnosing FTD
- Issue #23: Winter 2018: Understanding and Managing Apathy to Improve Care in FTD
- Issue #24: Spring 2018: An Evolving Understanding of ALS with Frontotemporal Degeneration
- Issue #25: Winter 2019: Everything Is Just Fine: Anosognosia in Frontotemporal Degeneration
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.