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 #23: Winter 2018: Understanding and Managing Apathy to Improve Care in FTD — In her mid-50s, Linda M. began showing a worryingly apathetic attitude toward activities she once enjoyed. After Linda was diagnosed with FTD, her husband, Kevin, worked with an FTD support group to develop strategies to better manage her lack of motivation. This issue outlines those strategies, which include verbal cuing, tailoring activities to past interests, and planning structured activities..

Issue #22: Summer 2017: When the Diagnosis Doesn’t Fit: Challenges in Diagnosing FTD — Mr. P’s strange recent actions led him to a diagnosis of depression, but his wife Jane remained unsatisfied. Repeated visits to physicians, neurologists and other healthcare professionals revealed the actual cause of her husband’s behavior: FTD. This issue shows how healthcare professionals can work with family members to facilitate a correct diagnosis for their loved ones.

Issue #21: Spring 2017: Family Participation in FTD Research — As a former nurse, Anne L. made a career of helping others. So after she was diagnosed with bvFTD, she and her husband Paul got involved in FTD research to help scientists someday develop an effective treatment for FTD. While participating in FTD research is immensely valuable, it also presents unique obstacles to families as they travel to research facilities and academic centers. This issue shows various ways that health care professionals can help families overcome these challenges.

Issue #20: Fall 2016: Comfort Care and Hospice in Advanced FTD — Because FTD is a terminal illness that often strikes people aged 60 and younger, many people are diagnosed before they have adequately planned their end-of-life care needs. This issue tells the story of Mark H., diagnosed with bvFTD at 60, and his wife Terry, who collaborates with health care professionals to define Mark’s care goals as he nears the end of his life. It explains how health care professionals can work with family members to ensure that persons diagnosed with FTD receive end-of-life care that matches their wishes.

Issue #19: Summer 2016: Think Like an Occupational Therapist: The Importance of Individualized Activities in FTD Care — Dan is a middle-aged man from Ohio who has FTD. His symptoms have frustrated the efforts of his wife, Rita, to engage Dan in necessary self-care activities. Fortunately, occupational therapists are trained to overcome exactly these types of challenging behaviors. This issue explains how Rita worked with a home-based OT — and, later, therapeutic recreation specialists — to develop an individualized plan based on Dan’s own unique behavioral patterns, needs and interests. This tailored approach has helped Dan to remain an active participant in his own life.

Issue #18: Spring 2016: FTD When There Are Kids in the Home: Creating a Village of Support – The case of David S. explores the stress that is put on families when a parent is diagnosed with FTD while still raising young children. This issue explains how often times, residential and facility care staff have an opportunity to help the entire family cope by supporting the primary caregiver. Providing information and resources for education, while offering comfort throughout all phases, is essential to ensure the health of the family and to the adjustment and well-being of individual members. The education sheet What to Do About… offers tips on how to manage stress by building a village of support, while also effectively responding to the children’s needs.

Issue #17: Winter 2016: Maximizing Communication Success in Primary Progressive Aphasia – The case of Ben M. explores the progression of PPA by detailing how symptoms impact daily living over time, and some interventions that can potentially help to maintain quality of life. This issue provides an overview of PPA and its subtypes, offers practical tips for facilitating communication at each stage of the disease, and provides a listing of online resources to aid individuals living with PPA and their caregivers. The education sheet What to Do About… highlights the role Speech-language pathologists (SLPs) serve on the care team and describes treatments that may be implemented at each stage of PPA, with emphasis on rebuilding lost function, supplementing verbal communication with nonverbal modes of expression, and providing training for communication partners.

Issue #16: Fall 2015: Easing the Transition: Residential Long-Term Care and FTD – The case of Gerald R. addresses challenges associated with transitioning from home care to residential long-term care. Several aspects are covered in this issue: visiting, limiting TV, and navigating HIPPA regulations when addressing concerns from other residents’ families. The education sheet What to Do About… shares practical tips to minimize Relocation Stress Syndrome, which is characterized by confusion, agitation, behavioral and physical issues resulting from a change in environment.

Issue #15: Summer 2015: Falls and Dysphagia in PSP – The case of Jackie Riddle highlights the challenges of living with PSP, and especially the issues of loss of balance and dysphagia. The issue highlights the importance of maintaining daily exercise, and gives suggestions for working collaboratively with rehabilitative therapists, aides and other caregivers to maintain quality of life. The education sheet What to Do About… shares additional tips and strategies for accommodating the environment to meet the needs of the individual and family.

Issue #14: Winter 2015Changes in Eating and Managing Related Compulsive Behaviors – The case of James McKnight offers lessons and tools for health professionals and family caregivers addressing hyperoral behavior in FTD. This issue also spotlights how the right environment combined with the right care helped to improve quality of life for Ms. D., a 49-year old woman living with FTD. A new What to Do About… education sheet outlines medical approaches, behavior responses, and environmental modifications to address hyperoral behavior.

Issue #13: Fall 2014: The Loss of Empathy and Connection in FTD – The case of Mimi Jones in this issue 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, 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.