More and more young children and teenagers are learning to deal with changes in a parent or grandparent as an estimated half a million North Americans are diagnosed with early onset dementia. This month, Elder Voice focuses on talking to children about dementia.
Before having a conversation with your children, learn as much as you can about dementia. There will be lots of questions. When you don’t know, you can say that, and add “let’s try and find out.” Be prepared for ongoing discussions and questions down the road.
There is no formula for who should take the lead in conversations with children. It might be the person with the dementia if it is at a stage where they can acknowledge and talk about it. It might be both parents, or it might be with a doctor.
First, be honest. Children will have noticed changes in their loved one. They will make up reasons if they do not have the correct information. For younger children, explanations can be simple: “Daddy/Grandma’s brain is not working right/is broken.” Or, “It is like the on/off button is not working.” Or, “Sometimes when people get older they get a disease in their brain. It can make them forget things or get mixed up. Sometimes they cannot do some things anymore.Children do not get this disease.”
Older children can be told more directly, “We have all seen changes in Mummy.The doctor says she has Alzheimers….Do you know what that means?… It is a disease of the brain that affects her memory and make it more and more difficult for her to do the things we do in everyday life.”
Guide yourself by their questions to gage how much information to give. Younger children, for instance do not need to know at first that the dementia will get worse, but they do need to know it will continue.
Older ones need to be told that more changes will come. They may ask if it will cause death. You can be honest and say there is very little treatment, so most likely, but no one knows when and it could be a long time. You can also talk about how the family will cope with changes that will occur. Let them know they can participate in problem solving. Emphasize you will you will all get through this together.
A first reaction to hearing that a loved one has a serious illness may be shock and fear. The shock is that what they have been seeing is a non reversible disease.Younger children’s fear may be that they or the other parent will also get the disease and about security and stability–“who is going to take care of me?”
Anger, resentment, and frustration may follow the shock and fear.It does not seem fair to them that they have to deal with this and be robbed of someone who should be with them for a very long time. They may have trouble coping with the limitations that dementia causes their loved one, such as not being able to help with homework or drive them places. They may resent having to care for a parent who was supposed to care for them or for not having the same finances they did.They may feel embarrassed by what their parent does or says and not want their friends to come to the house. They also may just not know what to do or say when their loved one does something “strange.” You can model how to handle situations and behaviour that is out of character.Tell them you all have to learn what to do.
The sadness that follows the anger may be exhibited as anxiety, denial, or withdrawal. Children may act as though nothing has changed. Teenagers may stay away from the house or act out or not go to school.
Start conversations if your children do not. Normalize feelings by letting them know you feel angry, frustrated, sad, helpless or cheated sometimes too. But let them know that you all have to keep living your lives, and they still must do certain things, such as go to school. This provides the structure and reassurance they need.
Some children try to “rescue” their parent from grief or burden by taking on more and more of the duties of house and home, to the detriment of their own life or schooling. Be clear about the help you need and the changes you all have to make, but at the same time be clear that you are still the adult and it is your job to take care of them.
It is important to focus on and tell children that Dad still recognizes love and attention, even when he does not remember names.Also,that there are still things they can do with him individually and as a family. Younger children can still paint, sing, build things with or for their relative, for instance. Dad can still come to watch a school play or hockey match.
Nursing homes can be upsetting to children at first. Warn them about what they will see. Consider keeping first visits short and in a calm and friendlier area of the home such as a garden or patio in nice weather. Get to know some of the residents first so that you can introduce them to your children by name.
What is important in helping your children deal with dementia is continuing to be open with information and to answering questions. Organizations such as the Alzheimer’s Society have information and support groups that are invaluable for helping you help them.If it seems appropriate, you or your children may benefit from seeing a counsellor, no matter what their age and either individually or as a family. Diamond Geriatrics offers professional counselling for all members of the family to help you through the dementia journey.
Things We Like: AFA Teens
AFA Teens is an online community, aimed at teens with family members affected by the disease and those purely interested in the cause. It provides support from experts and the opportunity to share experiences and connect with each other through a bulletin board and blog.
And also: click here to see resources for children and teens from the Alzheimers Association.