Preparing Children for Visits to Relatives with Dementia
With the holidays coming up fast, parents should spend some time with their children to prepare them for what they may encounter if they are visiting with a relative with dementia. There is no one message to impart. What a child will want and need to know will depend on the child’s age, his or her previous relationship with the relative with dementia, how often the child sees this relative, and the behavior patterns of the relative.
There are several likely behaviors that children should know about in advance.
- Not recognizing the child
- Repeating questions just answered
- Inability to do things that comprised a part of the past relationship (reading a story, going shopping, talking sports or politics)
There are a number of books for children that are available, and videos as well. However, these tools are not appropriate in every situation and for every child. You know your child and your relative with dementia better than anyone else. So take the time to talk, maybe more than once, to answer questions as they occur to your child.
One point you may want to make is that people with dementia lose their memories in reverse order. They often recognize their own children long after they have stopped recognizing their grandchildren or great grandchildren. It can be devastating for a child to realize that a beloved grandparent no longer knows who they are. It is also possible that the person with dementia will confuse a grandchild for their adult child. If you think that either is a possibility, explain to the child that the loss of recognition is not due to a lack of love, but is a part of the illness. Children are likely to be relieved to know that the failure to recognize them is not due to anything they have done. It may give rise to a needed conversation about a sense of loss, and the feelings of sadness that everyone in the family may be feeling.
Children over a certain age should be prepared for repeat questioning, and encouraged to be patient. Explain that not only can the relative not process the information, but that telling the relative that they are asking the same question again only makes them feel badly. Since repeated questions can also be a clue about something that the relative is worried about, the adults should keep an ear open to assess if there is a need behind the questions. With older children, mention that the cycle of questioning might be broken with a diversion.
People of all ages should be told not to ask the person with dementia if he or she remembers an event, a place or a person. The conversation should be in simple sentences and very direct, not a problem with young children, but a common issue with teenagers. Irony, sarcasm and even humor may not be understood and can further confuse those with dementia.
You and your children might want to brainstorm in advance about the things that they can still do with the relative. Encourage them to engage in activities previously enjoyed together, and think of ways to modify favorite activities that are now no longer easy to do. People with dementia often enjoy watching children at play and often do not have many opportunities to do so. Having a child sit in a lap or give a hug are often wonderful moments. Think of simple pleasures that children and older people can do together, such as looking at photos and asking about past times (“Tell me what food your mother cooked for Thanksgiving? What is your favorite food at Thanksgiving?”)
Speaking with your children before the family gathers gives them a chance to ask you questions that may have long been on their minds. Be prepared for questions about what the future will hold. Recognize that they may be embarrassed by the relative’s behavior, bored with the repetitious behavior, and then guilty for these feelings. Having a chance to talk about their feelings, and understanding that the rest of the family has similar feelings will help.