Understanding and Responding to FTD Behaviors
Behavioral symptoms associated with FTD often present significant challenges, not only for the individual diagnosed but also for their care partners. FTD behaviors, such as disinhibition, apathy, compulsivity, or loss of empathy, can be difficult to manage and frequently lead to heightened caregiver stress and burnout. As the disease progresses, many families are faced with the difficult decision of whether to transition their loved one to home-based support with professional caregivers or to a long-term care facility.
However, many care settings, particularly those more familiar with Alzheimerโs disease, may feel unprepared to support individuals with FTD, as the behavioral symptoms of FTD differ significantly from those seen in other types of dementia. Facilities often expect memory loss to be the primary challenge, whereas in FTD, it is often the behavioral and personality changes that are most pronounced early on. This mismatch in expectations can lead to frustration for both staff and families, and more importantly, it can compromise the quality of life for the person diagnosed.
To ensure a successful care experience and reduce the risk of behavioral escalations, it is essential that care teams are provided with a solid understanding of the disease, along with practical, person-centered strategies for managing FTD-related behaviors. A thoughtful, empathetic approach can significantly improve communication, reduce distress, and enhance dignity and comfort for the person living with FTD.
Practical Strategies
- Know the symptoms of the disease.FTD behaviors aren’t intentional. They result from degeneration of the brain, typically in the frontal and temporal lobes. This directly impacts behavior and personality. Often, the behaviors are noticeably different from how the person used to behave. Common behaviors include:
- Disinhibition โ inappropriate actions or comments
- Apathy or lack of motivation
- Compulsive or repetitive behaviors
- Loss of empathy
- Poor judgment or impulsivity
Understanding these symptoms can help you respond with compassion rather than frustration. Use AFTDโs Behavioral Symptom Chart for guidance on responding.
- Stay calm and non-confrontational
- Use a neutral tone and body language.
- Donโt argue, correct, or try to reason. Logic often doesn’t help.
- Avoid power struggles.
- Redirect and distract
- Shift the focus to another topic or activity. For example, if theyโre fixated on a repetitive question, redirect with a snack, walk, or familiar task.
- Create structure and routine
- Predictability helps reduce confusion and anxiety.
- Keep daily routines consistent (mealtimes, bathing, etc.).
- Reduce overstimulation (noise, crowds, clutter).
- Set boundaries and modify the environment
- Remove triggers; for instance, if wandering is an issue, lock exterior doors or use alarms.
- Limit access to dangerous items (knives, car keys, credit card, firearms and medications).
- Use signs or labels to help with navigation and understanding.
- Simplify communication
- Speak slowly and clearly using short sentences.
- Use gestures or visual cues.
- Be patient and allow time to respond.
- Empathize and validate
- Acknowledge the personโs feelings (โI see youโre upsetโ), even if the behavior is irrational.
- Donโt try to correct distorted thoughts. Meet them where they are cognitively.
- Focus on strengths and interests
- Engage the person in tasks or hobbies they still enjoy or might take up.
- Tailor activities to their current abilities, to foster engagement and self-esteem.
- Modify the environment
- Track behaviors using AFTDโs Behavior Tracker to assess triggers and potential trends.
- When triggers are identified, try to modify or avoid the trigger instead of trying to change the personโs response.
- Collaborate with specialists
- Work with neurologists, behavioral health professionals, and occupational therapists to develop a comprehensive care plan.
- Consider medications only when non-pharmacologic strategies are insufficient and under expert supervision.
- Support the caregiver
- Encourage respite care and support groups to reduce caregiver isolation and burnout.
- Create open lines of communication among family, facility staff, and medical teams.
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