Talking with a child whose grandparent has Alzheimer's disease may be particularly challenging. Even well educated adults have trouble understanding the disease, the behaviors that often accompany it, and the best ways to communicate with their affected loved ones. To a child, seeing their grandparent with Alzheimer's disease may be frightening, depressing, confusing, and embarrassing.
With other diseases that affect the elderly, what a child sees happening to their grandparent may be more concrete and easier to understand: hearing and visual loss, COPD causing shortness of breath or coughing, arthritis causing pain or trouble walking, or Parkinson's causing shaking and balance problems. Kids may be able to relate to the symptoms of these illnesses. With dementia, on the other hand, grandpa may feel fine, look the same as always, and even be just as fun and playful as ever. But he may start calling his grandson by the wrong name, getting lost, repeating himself, arguing more with his family, and acting unpredictably in public. Children are also usually aware of the increased stress level in their parents, and they may feel ignored or left out as their parents' time and energies become increasingly occupied with their grandparent.
Consider the following tips when talking to a child whose grandparent has Alzheimer's:
Provide explanations and reassurance
Kids may not understand exactly what's wrong with grandpa, but they know something is wrong. Even small children deserve an honest explanation in understandable terms: talking about a memory problem that nothing could have been done to prevent is fine, along with reassurance that you can't catch it like the flu. Saying grandpa has a sickness that affects the brain is OK too.
Address common fears
Reassure the child that she had nothing to do with causing the Alzheimer's, and that grandma still loves her just as much even if she can't express it. She shouldn't be worried that she may say or do something that will make the disease worse, and this doesn't mean either she or her parents will develop Alzheimer's.
Talk frequently about what is going on
Create an atmosphere in which the child is comfortable asking questions. Let the child guide your answers: she will often let you know one way or another how much information she needs or wants. Encourage her to express her feelings openly and that it's OK to feel sad, angry, or confused.
Involve children in activities
It's important for children to understand that having Alzheimer's doesn't mean you can't still engage in many fun activities. Playing catch with a ball, playing familiar card games, going for ice cream, and listening and dancing to music or watching sports or movies together are just some of the ways children and people with Alzheimer's may interact. In nursing homes and assisted living facilities some of the most enjoyable moments for the residents involve activities shared with children.
Consider books and other resources
Many children's books address a grandparent having Alzheimer's disease. What's Happening to Grandpa? and The Magic Tape Recorder are just two examples. Some Alzheimer's Association chapters offer support groups for young people.
Mace, N. L., & Rabins, P. V. The 36-Hour Day: A Family Guide to Caring For People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life. Fourth Edition. Baltimore: Johns Hopkins University Press. 2006.