(LifeWire) - When a grandparent or other loved one is diagnosed with Alzheimer's disease, it can be the children of the family who are most affected. Adults are capable of understanding the disease, its symptoms and what to expect. Parents and other relatives need to pass along this knowledge - in an age-appropriate way - to children who will be impacted by the disease.
Breaking the News
At any age, children can sense discord and stress in their environment, so it's important to address any concerns before kids make erroneous assumptions.
The conversation will differ depending on the child's age. For younger children, you don't necessarily need to use the term Alzheimer's disease. Instead, talk about how the child's loved one is sick, will have trouble remembering things and might sometimes be confused. Be sure to mention that their loved one will probably get sicker and that it's important for the family to help out. Depending on their level of understanding, try to prepare them for the changes they'll see in their loved one.
Teenagers, who are more capable of understanding the diagnosis, should hear more details, such as how long their loved one is expected to live and what treatment options are available. Talk to them before inviting a loved one to move in for full-time care. While parents might not always abide by teens' opinions, it's important that everyone's voice be heard.
Reassure children that Alzheimer's disease is not infectious. If the loved one was diagnosed before age 65, talk to older teens about the possibility that the disease is inherited. If early-onset Alzheimer's disease has affected several immediate relatives, the family might consider genetic testing for the disease.
Continue to talk to children and teens about the situation when the disease progresses to the point where their loved one no longer recognizes them. Acknowledge their feelings and assure them that their loved one still loves them and still appreciates their visits. Allow them to grieve this loss, and don't force them to continue visiting if they are truly uncomfortable.
Emotions and Reactions
Children can experience a variety of emotions relating to their loved one's condition, but they might not volunteer their feelings. In some cases, parents might need to anticipate these emotions and be proactive about initiating a conversation.
These emotions can include:
- Fear that parents, other relatives or they themselves might be diagnosed with the disease
- Anxiety, sadness or fear regarding changes in their loved one's behavior or personality
- Frustration over having to say things many times or needing to repeatedly identify themselves
- Remorse over acting frustrated or guilt about not having the disease themselves
- Self-consciousness about being in public with their loved one or, if the loved one lives with the family, feeling ashamed of their living situation
Remember, kids and teenagers don't always express their emotions in the same ways that adults do. Instead of talking about their fears, worries and guilt, they might exhibit behavioral problems, be distracted from schoolwork, avoid interaction with the family and even complain about physical ailments. If this occurs, try having another conversation; if necessary, ask a trusted teacher, another adult or a school counselor to sit in on it.
Offer continuous support to children while they cope with their loved one's disease. It's important to allow them to express themselves, to avoid judging their feelings and to answer all of their questions as honestly as possible. For more help, visit the Alzheimer's Association website for kids and teens.
It can also be helpful to engage the children in family-related activities, such as making a family tree or looking at old photographs. These activities can help children feel connected to their loved one.
Parents or guardians can also engage children in making a memory book for their loved one. Memory books, which have been shown to ease behavioral symptoms in people with Alzheimer's disease, usually consist of family photos and other memorabilia. The book can help a loved one with Alzheimer's disease reconnect with memories. Children can also write a letter or draw a picture for their loved one to be included in the book.
Bourgeois, Michelle. "History of Memory Books." Department of Communication Disorders: Research Lab and Caregiver Resources. 2007. Florida State University. 23 May 2008 <comm2.fsu.edu/faculty/commdis/bourgeois/memorybook.html#memorybooks>.
Callone, Patricia, Connie Kudlacek, Barbara C. Vasiloff, Janaan Manternach, and Roger A. Brumback. . A Caregiver's Guide to Alzheimer's Disease: 300 Tips for Making Life Easier. First. New York: Demos Medical Publishing, 2006.
"Helping Children Understand Alzheimer's Disease." Alzheimer's Care. Apr. 2007. Alzheimer's Society of Canada. 3 Jun 2008. <www.alzheimer.ca/english/care/children.htm>.
"Talking to Teens and Kids." ALZ.org. 27 Oct. 2006. Alzheimer's Association. 3 Jun 2008. <www.alz.org/living_with_alzheimers_talking_to_kids_and_teens.asp>.