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.  This work has been a catalyst for increased attention to the needs and for the development of additional resources.

For Parents

What About the Kids? Booklet  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 to order print copies, click here

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 or 866-507-7221.

When Dementia is in the House. This website 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

kids website pic 1AFTD Kids and Teens This website provides a place where kids and teens can ask questions, find answers and share experiences with peers who are on this journey. Two sides of the website present information in an age appropriate way for children 4-12 and teens 13+. Children and teens are invited to submit their own poems, short stories, videos diaries and other creative works to the “Kids (Teens) Like Me” section of the website.

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.

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.  Each one is about 10 minutes in length.

1)  On this link,  go to Act 4 “One Brain Shrinks, Another One Grows”.  The story begins around 46:25 minutes into the hour.

2)  On this link, go to Act 3 “Heart Shaped Box” at 46:35 minutes into the hour.  There is some music and then the story begins.


Findings of the AFTD Task Force on Families

From March 2010 through March 2013 the AFTD Task Force on Families with Children addressed 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.