'Grandma Doesn't Know My Name!' Helping Your Child Cope with Alzheimer's

06/08/2012 06:27 pm ET | Updated Aug 08, 2012
  • Marie Marley award-winning author, 'Come Back Early Today: A Memoir of Love, Alzheimer's and Joy.' Co-author of 'Finding Joy in Alzheimer's: New Hope for Caregivers

Children can be deeply affected when a beloved grandparent develops Alzheimer's disease. They may become afraid, confused, sad, angry, frustrated, guilty, worried, or embarrassed -- just to name a few potential feelings. Although each child reacts differently, there are some common fears:

1. The grandparent doesn't love them anymore
2. Their grandparent may be crazy
3. It's their fault that their grandparent is sick
4. They may catch the disease
5. Their parent(s) may get it

Signs That Your Child May Be Having Problems Coping

The Alzheimer's Association has published a brochure for parents that lists the following behaviors children may exhibit if they are having a hard time understanding or accepting the disease:

1. Withdraw from or lose patience with the person
2. Do poorly in school
3. Express physical pain, like a stomachache or headache
4. Spend more time away from home
5. Stop inviting friends to the house
6. Argue more with others at home, especially those providing care for the person with Alzheimer's

Special Issues for Teens

Teens may express a variety of thoughts -- both positive and negative -- about how their lives have changed because of a grandparent's dementia. According to the brochure mentioned above, these thoughts may include:

1. I don't like to talk about what going on at home with my friends
2. When I help out with my grandparent I feel like my family really needs me
3. I feel good that I know how to do the little things that make a difference for my grandparent
4. Sometimes I feel embarrassed about how my grandparent is acting
5. I don't feel comfortable having my friends over
6. I've never felt closer to my mom now because we're facing this together

What You Can Do to Help Your Child

Explain the disease in simple terms. Take into account the child's age and ability to understand what you're saying.

Explain in simple language how the grandparent may continue changing with time. Again, take into account the child's age and ability to understand. With younger children don't provide so much detail that they will feel overwhelmed.

Encourage questions. Answer honestly, simply and using age-appropriate language. There will probably be many questions if you prompt your child to ask whatever is on his or her mind regarding the grandparent's dementia.

Address the fears listed above, even if your child doesn't bring them up. There's a good chance he or she is experiencing one or more of them.

Your child is probably experiencing many different difficult emotions. Explain that these feelings are normal.

Set aside time to be together when your child can feel safe to talk about the situation. It can be helpful to engage in these conversations outside the home and away from the grandparent so he or she feels truly safe in talking about it.

It can be helpful for children to make a "Memory Box" -- a box filled with items that will remind them of past pleasant times they spent with the grandparent. This box can also be shared with the grandparent.

Read books (or watch videos) together about Alzheimer's designed especially for children and teens. The Alzheimer's Association has a comprehensive annotated list of books, videos and web resources, categorized by the age groups for which they are appropriate.

Encourage your child to spend time with the grandparent doing simple things together. The Alzheimer's Association has an excellent list of 101 ways to spend time with a person with Alzheimer's disease. Many of these activities can be carried out by kids or teens. These are especially appropriate for use with patients in the earlier stages of the illness.

In the later stages of the disease, when the grandparent is significantly demented, your child may feel very uncomfortable spending time with the grandparent and/or the grandparent may not want to see your child. If this happens, it's usually best not to coax them to be together.

Children may adjust to the situation better than you expect. In some cases they may even cope better than adults in the family. Also, keep in mind that children often reach dementia patients in ways that adults cannot, so the time they spend with the grandparent may be satisfying -- even fun -- for both of them.

Where to Get More Information:

The Alzheimer's Association web site has extensive resources on this topic designed respectively for young children, teens, parents, and teachers. These include articles, handouts, videos and web resources.