Frontotemporal degeneration (FTD) affects the entire family. We admire your strength and applaud you for getting online to learn all that you can about  walking this journey with your children. This site was created to provide resources to support your family as you tackle FTD together.

AFTD is here to help 

This website is provided by The Association for Frontotemporal Degeneration (AFTD), a non-profit organization whose mission is to advocate for people confronting all forms of frontotemporal degeneration (FTD). AFTD’s goals are to promote public awareness; provide information, education and support to people diagnosed with FTD and their families; educate health professionals; promote research for treatment and a cure; and facilitate the international exchange of ideas.

For several years, AFTD has been addressing the utter lack of resources to help children and teens understand and cope with a parent’s illness.

Early initiatives focused on expanding supports to parents because helping you to cope is one of the best ways to support your children. AFTD developed a telephone support group in 2009 for parents with a diagnosed spouse or partner. The following year a task force of professionals and caregivers was convened “to learn and to lead” in addressing the needs of FTD families with children. Their work resulted in a publication for parents called “What About the Kids,” and publication of the full task force findings in a peer-reviewed journal to stimulate additional attention to these needs among dementia clinicians and researchers.

The ultimate goal of the task force was to create a resource for reliable information, coping strategies and encouragement for children who are affected by FTD in their family. The AFTD Kids and Teens website is the result.

Knowledge is power – for you and the kids

The site reflects the collaboration of professionals and families including parents, caregivers, physicians, people with FTD, social workers, bereavement counselors, and children and teens. It is designed to be a nurturing, understanding and safe environment for your kids to visit to read about FTD, find coping strategies, engage around positive activities and hear from other kids who know FTD firsthand. We hope that they will feel less isolated and more empowered by visiting the site and finding they are not alone in their experiences with FTD.

Your children grow and change each year, as does the health of the parent affected. What kids understand about the disease and how they respond to it will evolve over time. This site has been designed to be a resource for children as they grow in knowledge and emotional maturity, and as your family situation changes due to FTD’s progression.

Navigating the site

Your familiarity with the website will help you frame it for your child.  Not every child will be ready for all parts of the website at one time.

Let your understanding of your own child’s strengths and concerns guide you.  It’s important to be honest about what is happening in the family but too much information at one time can be overwhelming. You can be the judge of what your child is ready to hear and know.

The website has been divided into two smaller sites — one for kids approximately between the ages of 4 and 11, and one for teens, roughly ages 12 and up.

The Kids’ Site
Meet Sophie and Connor. These two spunky and smart kids are here to introduce young visitors to FTD, show them ways to cope with feelings and help them still enjoy being a kid. You may find it helpful to print a copy of Sophie and Connor’s story to read with your kid(s) before bringing them to the website. This is a great way to introduce some of the concepts on the pages. Share your favorite parts of the site with your children and encourage them to come back to explore.

Kids are invited to share artwork, poems, or stories about their FTD experience by way of the section entitled “Kids Like Me.” These pages create a sense of community for kids who may feel very alone having a parent with FTD. Visitors can browse through what others have shared or they may submit something of their own. A parental consent form must be included with any submissions.

The Teens’ Site
This section of the website offers information, tools and support for adolescents at a more mature cognitive level, and especially encourages them to keep in touch with their own thoughts and feelings as they work through what is going on with their parent.

One goal of this part of the site is to offer a space for teens to learn from and encourage each other. Teens may share their experiences through written or video uploads that are featured on the site. Through real stories from other teens they will recognize they are not alone. All submissions from teens under 18 must be accompanied by a  parental consent form.

Link to sitemap

A graphic sitemap that details the sections and contents of the website can be downloaded or printed for your reference.  We welcome your feedback on the site as you and your children become familiar with it. Contact us anytime by email at [email protected] or by phone toll-free at 866-507-7222.

You are not alone

The AFTD Kids and Teens website was inspired by the tremendous bravery and spirit of all FTD families. We are confident that together we can create a brighter future for others facing this disease. We hope you will use the site and share it with others as you learn, grow and prepare for the journey before you. We understand the isolation and turmoil that FTD can bring. We also know that daily victories of love over disease happen every day in our families and communities. May this site help to foster the victory of love in your family.

Additional resources