Partners in FTD Care Newsletters

Welcome to the Partners in FTD Care quarterly newsletter library.  Partners in FTD Care is your resource for case-based learning to build knowledge and confidence in serving people with FTD.  Each issue presents an actual care scenario that can be used easily in staff training.

Issue #13: Fall 2014: The Loss of Empathy and Connection in FTD – The case of Mimi Jones in this issue of Partners in FTD Care demonstrates the importance of understanding emotional absence, and how strongly the loss of empathy and connection in FTD impact the person’s family and delivery of care. Training and support for all members of the caregiving team can produce more positive interventions and much needed support to assist caregivers. Important tips for the entire caregiving team are available in the What to Do About… education sheet.

Issue #12: Summer 2014: Sexual Behavior in FTD – When a person develops FTD, the disease can cause changes in sexual behavior; several types of changes are possible that are distressing to caregivers and others.  In this issue of Partners in FTD Care, two case studies illustrate issues of sexuality in FTD and promote discussion and development of effective interventions.  What to Do About Changes in Sexual Behavior in the Home/Community and What to Do About Changes in Sexual Behaviors in Facility Care provide important tips for family and professional caregivers alike.

Issue #11: Spring 2014: Why Does He Act Like That? Aggressive Behaviors in FTD – A call comes into the nurse’s center at the memory care community: “Jake just punched Mary and is grabbing two of the residents.”

The case of Jake McKnight in this issue of Partners in FTD Care demonstrates how careful planning, behavioral interventions and medications can be used effectively to assist individuals with FTD and aggressive behavior. “What to Do About…” provides succinct tips for professional and family caregivers alike.

Issue #10: Winter 2014: It’s Complicated! Incontinence Management in FTD – Incontinence for persons with FTD is quite different from incontinence in an older dementia population. Management strategies must consider particular cognitive and behavioral impairments in FTD, and address as many of the potential causes as possible.

The case of Bob Weaks in this issue of Partners in FTD Care and the “What to Do About…” handout provide information and tools to promote dignity for the patient and effective management.

Issue #9: Fall 2013: When the Meaning is Lost – Semantic Variant PPA - Individuals with semantic variant primary progressive aphasia (sv-PPA) lose the meaning of words, develop difficulty recognizing faces and have trouble reading the emotions of others. In addition, disinhibited, rigid and compulsive behaviors develop over time.

The case of Betty James in this issue of Partners in FTD Care and the accompanying “What to Do About…” handout introduce the special challenges of svPPA and provide practical tools you can use.

Issue #8: Summer 2013: FTD Symptom or Pain – How Can You Tell?  The unusual behavior of someone with frontotemporal degeneration (FTD) is not always what it seems.  Because people with FTD are often unable to express their needs verbally or accurately, treatable medical conditions and pain are easily missed.  The case of Joan Brown, 63, illustrates how important evaluation and management of pain are to compassionate care.

This issue comes with AFTD’s new tool for professional and family caregivers, “What to Do About…”, as well as a special bonus handout summarizing common FTD behaviors and symptoms and possible medical considerations.  Visit the Partners in FTD Care archives for past topics.

Issue #7: Spring 2013: In FTD, Roaming is Not Wandering: In over 70% of cases, frontotemporal degeneration begins younger than age 65. People are often physically active and have cognitive and behavioral symptoms that poses unique care challenges.  The case of Jay Gould illustrates how roaming in FTD is different from wandering, and what to do about it.

With this newsletter, Partners in FTD Care introduces a new tool for direct care workers and family caregivers. “What to Do About…” is a single page of practical tips that you can use and share. Together we can improve care for people with FTD!

Issue #6: Winter 2013:  Activities for Individuals with FTD:  People with FTD have impairments that affect participation in activities differently than people with Alzheimer’s.  Read the case of Hope Lynn, 50, and how she and the assisted living staff benefitted from a carefully developed activity plan.

Issue #5: Fall 2012: Primary Progressive Aphasia, Non-Fluent Type: In order to serve people with PPA in community settings, it is important to appreciate how the disease progresses over time. The case of Lily Noble, 46, shows the importance of understanding the trajectory of the disease and how it impacts patient, family and care management.

Issue#4: Summer 2012: Compulsive Behavior in FTD:  Simple repetitive movements, rituals and repetition of word or phrases are common in FTD.  The case of David, 57, shows how assisted living staff and David’s family work together to reduce behaviors and reflect respect for all.

Issue #3: Spring 2012How to Approach Aggressive Behavior:   Some people with FTD experience periods of anger and aggressive behavior.  The case of John Brown, 56, shows how careful assessment of behaviors and active coordination of care in a low-stress, structured environment can ensure safety and maximize compassionate care.

Issue #2: Winter 2012: Communication Strategies in FTD:  Speaking, reading, writing and naming are aspects of communication that are often impaired in FTD.   The case of Karl, 59, addresses effective communication techniques for FTD and the importance of including a speech-language pathologist as part of the team.

Issue #1: Fall 2011: Behavioral variant FTD:  One of the most common clinical presentations of FTD is changes involves behavior and personality.  The case of Margie Eline, 51, symptoms of bvFTD are discussed as well as strategies for staff for working with residents who are young, physically fit who do not appear to have dementia.