World FTD Awareness Week 2023

September 24 – October 1, 2023

As we embark on Frontotemporal Dementia Awareness Week, it’s crucial to shed light on this complex condition and understand why this week of awareness is so vital.

Frontotemporal dementia (FTD) is not a single disease but rather an umbrella term for a group of rare brain disorders that primarily affect the frontal and temporal lobes. These areas of the brain control personality, behavior, and language, which means that FTD often leads to dramatic changes in an individual’s personality, social interactions, and ability to communicate. In fact, unlike Alzheimer’s disease, FTD is characterized by its devastating effects on a person’s social and emotional functioning. It can manifest in behaviors such as impulsivity, apathy, or a complete loss of empathy, making it challenging for both patients and their caregivers to navigate daily life.

FTD Awareness Week serves as a beacon of hope and a rallying cry for the FTD community. It is a time to come together, educate, and advocate for individuals facing this formidable challenge. Below you will find a schedule of events for the week and resources provided by The Association for Frontotemporal Degeneration. You can also find the official schedule of events here.

SUNDAY: Self-Care

Frontotemporal dementia can place a significant emotional and physical burden on both patients and their caregivers. As we kick off Awareness Week, let’s prioritize self-care. Patients, take steps to support your own health, whether through meditation, exercise, or spending time with loved ones who bring you joy. Caregivers, remember to also care for yourselves; seek support, join a support group, and consider respite care options to recharge.

MONDAY: Support

Monday is the day to reach out and offer concrete support to caregivers and individuals living with FTD. Whether it’s a heartfelt conversation, a helping hand with daily tasks, or simply being there to listen, your support makes a world of difference. A small gesture can have a significant impact.

TUESDAY: Sustain

The organizations serving the FTD community play a crucial role in research, support, and advocacy. Show your support by donating any amount to a trusted FTD charity or nonprofit organization. Your contribution helps sustain the vital work they do, bringing hope to those affected by FTD.

WEDNESDAY: Volunteer

Consider signing up to make a difference in your local community. Volunteering can be a powerful way to connect with others who understand the challenges of FTD. It’s an opportunity to provide direct assistance to patients and caregivers, creating a supportive network that extends beyond Awareness Week.

THURSDAY: Advocate

On Thursday, let your voice be heard. Advocate for FTD awareness by reaching out to your legislators. Share your personal story and explain why FTD matters to you. Suggest policies and supports that can improve the lives of those affected by this condition. Your advocacy can drive meaningful change.

FRIDAY: Educate

Education is a cornerstone of raising awareness about FTD. Share diagnostic checklists and information (found here) about FTD with friends, family, and healthcare professionals. By spreading knowledge, you contribute to early diagnosis and better care for those impacted by the disease.

SATURDAY: Research

Saturday is the day to delve deeper into FTD genetics and clinical trials. Understanding the science behind FTD can empower patients and families with knowledge about potential treatments and advancements. Sign up with the FTD Disorders Registry, reach out to a member of the CSAND Lab, or explore the CSAND Lab website “For Patients” section to get involved in ongoing research efforts nationally and at the CU Alzheimer’s and Cognition Center (CUACC).

SUNDAY: Celebrate

As Frontotemporal Dementia Awareness Week comes to a close, take a moment to celebrate. Honor or remember a loved one who has faced FTD, or celebrate someone who has supported you on this journey. Recognize the strength and resilience within the FTD community.

Continuing the Fun:

World FTD Awareness Week also has a #FTDhotshotchallenge you can participate in with your friends, family, and loved ones. To participate, take a shot of hot sauce and share the footage on social media to raise awareness. If you would like, you can use the FTD Association Social Media Kit (found here) to embellish your post with images and other fun visuals. The CSAND Lab, and coworkers at the CUACC, participated in this challenge with Dr. Peter Pressman (included as the featured image on this page or you can view the video at the end of this post).

Frontotemporal Dementia Awareness Week is not just a week of acknowledgment; it’s a week of action and empowerment. By following this schedule and participating in the activities outlined, we can come together as a community to support patients and their families, advocate for change, and work towards a brighter future for those living with FTD. Let us stand together, raise our voices, and make a difference in the lives of those affected by this challenging condition.

Written with assistance from ChatGPT-4.