Children and Teens

Families who have a parent diagnosed with FTD and children or teens in the home encounter additional questions and concerns.   How do I talk with my children about this disease?  What help is there for the children?  How can I possibly juggle their schoolwork, activities, all the household tasks and doctor appointments and demands of care?

In 2010, AFTD convened a Task Force on Families with Children to address the particular concerns of parents and children.  We hope this work will be a catalyst to the development of additional resources for children and teens.

As new resources become available through AFTD and others, they will be added to this page.

COMING SPRING 2014! AFTD Kids and Teens 

AFTD is in the final stages of developing a website for kids and teens who have a parent (or other loved one) with FTD. This new website will be a nurturing, knowledgeable and safe environment with separate sections for young children and for teens.  Each section will create a virtual community of understanding and support for children who often feel isolated. We are inviting children (ages 12 and under) to submit a personal story, poem or work of art to be featured on these pages.  Teens (13 and up) are invited to submit a short video.  Click on the highlighted links for more information or email:  kidsandteens@theaftd.org

For Parents

NEW! What About the Kids? Booklet  The AFTD Task Force on Families with Children has written and produced a brand new tool for parents with young children and teens. What About the Kids? is a sensitive, practical guide for parents to help their children deal with a parent who has FTD.  Download the .pdf from the above link or contact info@theaftd.org to request the printed booklet.  If you’re requesting more than 5 copies, please click here for our order form, which includes a $1/book charge to cover shipping costs.

AFTD Parents Telephone Support Group  AFTD sponsors a telephone support group for parents who manage care for a spouse with FTD and have school age children at home.  To learn more about the group, contact info@theaftd.org or 866-507-7221.

When Dementia is in the House This website, launched in Fall 2011 was created by Dr. Tiffany Chow and Katherine Nichols, a former caregiver.  It offers content  for parents and teens that was guided by focus groups with children who have been informal caregivers to a parent with FTD.

Talking with Children and Teens about FTD – First Steps An overview of some things to keep in mind as you plan how to talk with children about FTD.

What to Tell the Children? Without help, children may imagine their own reasons for changes in the household.  Parents can help by telling children the truth and addressing their concerns regarding cause, contagion, care, connection and communication.

Children’s Bereavement Grieving is an on-going process in FTD.  This chart outlines common responses of children at different developmental stages and ways that family and friends can help.

For Children, Teens

When Dementia is in the House This website, launched in Fall 2011 was created by Dr. Tiffany Chow and Katherine Nichols, a former caregiver.  It offers content  for parents and teens that was guided by focus groups with children who have been informal caregivers to a parent with FTD.

Frank and Tess – Detectives! – Download this friendly new activity book about frontotemporal dementia, designed by Atomic Orange Productions for Co-Authors Tiffany Chow and Gail Elliot. In this case, FTD stands for Frank and Tess, Detectives! who are trying to help their mother who is affected with FTD. There are plenty of colouring and puzzle activities that can also involve the patient. Sponsored by the Ontario Ministry of Health and Baycrest Alternative Funding Plan Innovation Grants.

When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change by Marge Heegaard (1991).  This book was created to help children understand and express feelings when someone in their family has a serious illness.  While not specific to dementia or FTD, the book uses the art process to teach concepts of serious illness, changes in a family and learn about related feelings.  Available through Amazon.com and BarnesandNoble.com.

Information for Kids and Teens on Alzheimer’s Disease The Alzheimer’s Association has produced a series of videos for children on teen on understanding Alzheimer’s.   Segments include references to young onset Alzheimer’s, and general suggestions that apply to all types of dementia.  The hallmark symptoms of FTD are not addressed, so previewing the segments or watching with your children is important for clarity about your situation.

Therapeutic Children’s Support Group Tricia Mettler, MA runs a therapeutic group for children, including those who have a parent with FTD.  The group meets in Denver, CO for more information please contact her at 720-436-4116.

Camp Building Bridges Started in 2008 as a pilot project by Tracey and Allen Mobley, Camp Building Bridges offers a summer camp experience for children and teens who have a parent with early on-set dementia, such as FTD.  The program was adopted by the Oklahoma/Arkansas Chapter of the Alzheimer’s Association to continue in 2009.

The Wisdom of Experience

We Are Learning Together - Terencia K. Beauvais-Nikl, RN, is the caregiver for her husband and the facilitator of an FTD caregiver support group. In this piece she describes some of the things she and her children have discovered along the way and how they have learned to cope.

An Audio Tribute – Recorded on NPR’s This American Life

Julianne Hill’s husband, Doug was diagnosed with FTD at age 38.  Their son was four years old when Doug was diagnosed.   Julie recorded two stories that were broadcast on NPR’s This American Life in 2001 and 2005.  The instructions for listening to the segments are below.  Each one is about 10 minutes in length.

1)  On this link, you first hear the pledge for donation introduction, then go to Act 4 “One Brain Shrinks, Another One Grows”.  The story begins around 46:25 minutes into the hour.  http://www.thisamericanlife.org/radio-archives/episode/188/Kid-Logic

2)  On this link, same thing with the donation, then go to Act 3 “Heart Shaped Box” at 46:35 minutes into the hour.  There is some music and then the story begins.  http://www.thisamericanlife.org/radio-archives/episode/294/Image-Makers

Publications

Findings of the AFTD Task Force on Families

The AFTD Task Force on Families with Children was formed in March 2010 to begin to address the challenges that families face.  Its goals included: 1) articulating the specific issues of parents and their children, 2) identifying existing resources to help them, 3) prioritizing projects for AFTD to implement for these families, and 4) stimulating the attention of a wider range of health care and social service providers to these needs.  The Task Force Final Report   can be downloaded here.

Opportunities to Get Involved

Your ideas and suggestions are important! If you would like to get involved with AFTD’s initiatives for families or if we can help with your research or program development in this area, contact AFTD at info@theaftd.org or 267-514-7221.