Adapted from an article written by Kristin L. Haring, LICSW. Reprinted with permission from the Indiana University Alzheimer’s Disease Center Spring 2006 Newsletter.
Alzheimer’s disease (AD) can be a troubling experience for children. They may feel frightened, angry or resentful toward their grandparents who are behaving in a confusing and disturbing manner. Parents of young children, who are also caregivers for a family member with AD, are often emotionally and physically drained, due to the many sources of stress in their lives, including coping with caregiving, managing household tasks, often working outside of the home, and coordinating their children’s activities. Children can easily feel that their grandparent’s needs are taking up too much of their parents’ time or causing their parents’ sadness. There are some effective strategies that parents can use to ease stress without adding to their already overflowing plates.
Education, promoting empathy, and validating feelings can provide children with tools that will allow them to feel more in control of what often feels like an out-of-control situation.
First, it is important that parents recognize that their children are also experiencing changes in their relationship with their grandparent. Acknowledge that you understand how they feel because you feel it too. You can say, “It is hard for me to see Grandma act this way,” or “It makes me sad when I see Grandma this way. How do you feel?” Children are grieving the loss of the grandparent they once knew - the woman who had tea parties with them, took them out for pizza, babysat them, walked them to the park and helped them with homework. It is difficult for the child whose grandmother used to read stories to him when she can no longer read the words, for example.
Children might worry about how their mother can take care of them and their grandparent. They express confusion, not always understanding what their grandparent is saying or what is making her angry. They often feel guilty or responsible for the behavior. Children may also feel embarrassed in front of their friends and their grandparent’s disease can easily become a shameful family secret.
Children may feel frightened when the grandparent yells at them and doesn’t let up. The elder who was never critical, is now always “on” them. A child can learn to disregard the grandparent, and treat her as though she were a child. Children may resent the time their parent spends away from them to care for the grandparent.
All of these are very normal reactions, most of which can be addressed with a few simple strategies.
Encourage your children to verbalize their feelings, even though they may be difficult to hear. Talk about your own feelings of sadness and loss. Allow the children to grieve the loss of the grandparent they once knew, and help them remember their grandparent before the disease. Look through photo albums and recall special times they shared. Some children never knew their grandparent without AD. You can create a memory of their grandparent before AD.
Educate children about the disease. The Alzheimer’s Association has a wonderful library of books and videos developed for children whose grandparents have AD. Knowledge is empowering. Emphasize that this is a disease of the brain and that the behaviors are not purposeful or malicious - a person with AD cannot help it. There are probably many children at your child’s school who have grandparents with AD. Educate the whole class or the whole school. The Alzheimer’s Association has a Speakers’ Bureau and would be happy to help.
Promote empathy. Encourage children to appreciate how a grandparent feels (i.e., sad, frightened, lonely, embarrassed), when he/she is asking to “go home,” is wandering aimlessly around the house, or is being told repeatedly that she is calling you the wrong name. Remind the children how they have felt when lost in a store, or when they are ill, or when someone is trying to talk to them and the room is too noisy and chaotic to understand what the person is saying.
Create a list of quiet activities for the child to do with the grandparent, such as folding laundry, watching a video, looking through photo albums, singing, sharing a healthy snack, or just sitting quietly together.
Focus on the importance of not arguing with the grandparent– “the person with AD is always right.” Encourage the child to have a calm demeanor, to speak slowly and clearly. Ensure that your child knows to get help from an adult in a situation that feels unsafe, rather than try to manage difficult behavior independently.
Model the appropriate way to interact. Speak slowly and clearly in order to allow your loved one with AD to comprehend what you are saying. Demonstrate patience and remain calm. Children learn by observation. Create a list of responses to frustrating behavior, and practice them together. For example, teach the child how to distract and redirect their grandparent. When a child has rehearsed a desirable response, he/she is more likely to use it automatically when the need arises.
Join a support group. It provides a safe setting in which children can talk about their feelings, share experiences with other children, learn more about the disease, develop positive coping skills, and remember who their grandparent was before the disease. Recognizing and responding to children’s feelings is important in helping them cope with the losses connected with AD and can help reduce the overall family stress.
Seek professional advice/counseling from a trained clinician, if necessary. If your child is having problems adjusting to a grandparent with AD, talk to your pediatrician and get more help.
Contact the Alzheimer’s Association at 1-800-272-3900 to learn more about the disease, valuable resources, advocacy, publications, programs, and support groups.