Talking about Genetics with Children
Information for Families with FTD
Talking with your child about FTD and the effects of the illness is very difficult. So, too, is talking to your child about the genetic and the hereditary nature of the illness and its implications. AFTD’s publication, What About the Kids? Frontotemporal Degeneration: Information for Parents with Young Children and Teens, offers guidance and suggestions to help children cope with a parent’s FTD. It includes information on how to respond to the initial questions children or teens may have about the heredity of FTD. The booklet, Understanding the Genetics of FTD: A guide for patients and their families, provides information on FTD genes, genetic counseling and genetic testing.
Regardless of family history, families worry about the next generation and what to tell the kids about their own risk. Understanding your children’s genetic risk starts by making sure you have the most accurate diagnosis and have a documented family history. Your doctor should be able to tell you whether he/she suspects a hereditary link.
If there is a hereditary link, this section explores how and when to talk to your child. For those with a sporadic form of the disease, your child may still fear getting the disease. Continue to follow emerging research and be prepared to answer questions and provide reassurance over time, even when family risk of inheritance is low.
For those suspecting family history of FTD
Being the well parent in a family suspecting or known to be carrying hereditary FTD adds a tremendous burden. Not only do you worry about your partner, but also worry that your children will one day develop the disease. If and when to raise the issue with children is a never-ending concern. There is no one answer to this question. Each family and each child is different, and you know your children better than does anyone else. However, there are some general guidelines that can help you address this issue.
Learning one’s genetic status affects every aspect of your life. Predictive genetic testing requires informed consent from the individual being tested. A child does not have the experience, and in many cases, the rational capacity to make an informed decision about this important issue.
Guidelines established by the American College of Medical Genetics, National Society of Genetic Counseling, and American Academy of Pediatrics state that children under 18 should not be tested for adult genetic conditions unless there is an intervention or treatment that can be given to avoid or delay that condition. Because there is no treatment or cure, children should not be tested for FTD or similar neurogenetic disease.
Even if the parent has no intention of sharing the information with his child, the knowledge of a child’s genetic status is bound to weigh heavily on the parent and could cause the parent to treat the child differently.
However, do talk to the children openly and sensitively about genetic links. Research shows children cope well and are ultimately happy they are have been included in dealing with the disease and have the information to make decisions for themselves. Kids who don’t learn about their own risk until later in their lives are often very angry and ultimately distrustful of the family.
When should that talk take place? Very young children typically will be concerned about what is happening to their parent now, not what will happen to themselves when they are older.
When a child asks, “Am I going to get what Daddy has?”, it does not demand a dissertation on genetics. Find out if your child is really asking if FTD is catching like a cold or the flu. You certainly can honestly reassure your young child that neither he nor you can “catch” the disease.
For an older child who might observe several members of the family with FTD, the “will I get it?” question needs a full answer. Still, first answer the question with more questions: “What makes you wonder about that?” or “What have you noticed about Mom and Uncle Jimmy that raised that question?” For those high school kids taking biology, ask: “What have you learned in school about genetics?” If it becomes obvious that she is worried about inheriting the family disease, a simple yet honest answer is called for.
Explain that many families carry genetic links to different diseases. For some it is dementia, for others, it could be heart disease or cancer. Tell your child that knowing that the disease is in the family can be scary but also allows the family to better understand what is happening and deal with it. For diseases that are treatable, knowing that the disease is in the family can allow family members to live more healthfully. If you feel you cannot give a more complicated answer, turn to your doctor or genetic counselor for help.
For families with known hereditary FTD
When a clearly inherited disorder is evident in the family, the time will come when a young adult’s true risk needs to be explained. Such a conversation takes tremendous courage on both your parts. Perhaps start the conversation with, “I think you are mature enough to know more about the family disease. Do YOU want to talk about it?” If the child says “no,” give him some options such as talking with a different family member, a genetic counselor or your doctor. This discussion may be too emotionally charged to have with you.
Do not take offense, but leave the door open for future discussions. If you don’t know what to say, call on your doctor or genetic counselor for help. Often a family meeting can be arranged. The following topics should be discussed:
1. The fact that the parent has an inherited form of FTD which means that the young adult and his siblings each have a 50% chance of inheriting the gene that caused the disease but also a 50% chance that they did not inherit it. That means that none of them might have inherited it or some might have.
2. It is possible to determine if someone carries the gene. This can be done after a gene mutation has been found in the family member affected with FTD. If the mutation is already known, you can inform your adult child of the gene. If the affected parent has not yet been tested, ask your child if she might want the information now or in the future, and include her in the decision of whether or not to test your spouse.
The test is done through a simple blood test and analyzed at an accredited laboratory. There is a charge for clinical testing, which may or may not be covered by insurance. DNA may be banked for future testing and testing may also be performed on autopsy tissue.
3. Knowing the family mutation allows people to make reproductive choices including in vitro fertilization with pre-implantation genetic diagnosis so that only embryos not carrying the mutation are implanted.
Reinforce that new genes are still being discovered and that much genetic testing for FTD was not available until recently (they may question why they were born with a possible mutation). Regardless of the age of the child, hope for the future through research is the most important message you can give.
Genetic testing should not be taken lightly. Even when testing the affected family member, the effect of the information on family members needs to be considered. For predictive testing, genetic counseling is essential. If your doctor does not have access to a genetic counselor, call the AFTD for recommendations.
Choose to be healthy
Knowing that FTD is in the family means that family members can choose to live in healthy ways and make the brain strong. A heart-healthy life will help protect the brain: eat a Mediterranean diet, get plenty of exercise and stay active.
Also, as a family, do everything possible to help research so that better treatment or prevention is available for the next generation–your child’s. This will empower your child to see himself as a do-er, not a victim. Show your child that he can make a difference–have a bake sale to make money, contribute cash to research, or write a report on FTD to educate others. Allowing your child to take some control over her own life will help to alleviate your burden.