beyond the video

A Child's Eye View of Alzheimer's
It's OK to Be Afraid

The complicated emotions of a child facing a loved one with Alzheimer's.

Video summary
Although six children are briefly interviewed about their grandparent with Alzheimer's disease (AD), this video focuses especially on three of them.

Megan and Danielle are teenage sisters who drive to see their grandmother in her nursing home. Their grandmother is seen smiling and then frowning, as if she is trying to figure out who her visitors are. One point not mentioned in the video is that people with AD lose their most recent memories first, and as the disease progresses, they often "go back in time," eventually believing they are young mothers or even children themselves. Therefore, as their grandchildren grow up, the grandparents with AD often don't recognize them because they remember them only as babies, or perhaps don't realize they are even old enough to have grandchildren.

Megan and Danielle do their best to be kind to their grandmother, telling her they love her and letting her stroke their faces, but they express their deep hurt that the person with whom they once played in the park has disappeared and doesn't even recognize them. Celebrity Maria Shriver, whose father died of Alzheimer's disease, affirms how difficult it is when the person we love no longer recognizes us.

Ashanti, 11, visits her grandmother every day, sometimes reading aloud to her. When her grandmother is in a good mood, she claps her hands at Ashanti's reading and tells her she loves her. When her grandmother is in a bad mood, she yells at Ashanti to "Go home!" which causes her to cry. Her older sister confirms what Maria Shriver has expressed earlier, that when her grandmother lashes out in words and body language it is not because Ashanti has done anything wrong, but because Alzheimer's disease has damaged her brain, and she can't make sense of her world.

Applying the video to your situation

If you are the grandchild of someone with Alzheimer's disease or another form of dementia, have you ever experienced some of the emotions described or situations shown in this video? Does it help to know other children have, too? Talk about your experiences.

Megan says that she doesn't like visiting her grandmother in the nursing home because every new memory of her grandmother being unable to relate to her seems to be replacing one of her happy memories from when her grandmother was full of energy and playfulness. How can you minimize the sad memories and hang on to the happy ones?

Danielle worries that her grandmother is suffering because she can't have a relationship with her grandchildren. Do you think her grandmother is aware of her inability to recognize her grandchildren? Or are Megan and Danielle the ones suffering most over their loss?

Danielle describes a time when her grandmother slapped her for no apparent reason, and we watch Ashanti's grandmother angrily tell her to "Go home!" If you are a grandchild whose grandparent with Alzheimer's disease has ever treated you meanly, were you able to not take it personally – to realize it was a result of your grandparent's dementia and not his or her real feelings about you? Talk about what happened.

All of the children expressed how hard it was to lose the person they knew as their grandparent – someone who showed them lots of love and caring. Ashanti's older sister says she knows it's hard, but that it's their turn to take care of the person who took care of them when she was able. Although it's difficult to do, can you see how it's a good thing to go on showing your love for your grandparent even if that grandparent no longer knows how to love you back?

What else about this video was meaningful to you?

If you are the parent of a child whose grandparent has dementia, does this video give you ideas for how to help your child understand the disease and deal with the sadness of watching their grandparent's deterioration?

Adapted from The Alzheimer's Project: Grandpa, Do You Know Who I Am? With Maria Shriver, Films for the Humanities & Sciences, A Films Media Group company, An HBO Production.

For More on Full Video:

Beyond the Video

Megan says that she doesn't like visiting her grandmother in the nursing home because every new memory of her grandmother being unable to relate to her seems to be replacing one of her happy memories...