I have been working on an article on grief…I have always heard that you should write about a subject you are familiar with…since losing our infant grandson Sami two weeks ago today, I have learned more about grief than I ever wanted to know…but am not yet ready to share my thoughts. God’s word has proved true (as it always does). As Christians, we are not grieving as those who have no hope; but still, we grieve that Sami will not be a part of our earthly lives. We do have hope we will join him in heaven someday. (I Thessalonians 4:13)

Instead, I decided to pull up an article I wrote for my newspaper column about five years ago on the subject of helping children understand what is happening when an elderly loved one has dementia. 

The title of that article (which I am using again today) was borrowed from the award-winning children’s book of the same name, written by Max Wallack and Carolyn Given. Max was only 17-years old when he co-authored this book, drawing his inspiration from growing up with a great-grandma who had Alzheimer’s. It has been described as “a poignant look at dementia through the eyes of a 7-year old” and I highly recommend it. 

Max’s experiences with “Great Gram” greatly influenced his life. He graduated summa cum laude from Boston University in 2015, was a student at Harvard Medical School, class of 2020, and is currently a research assistant at Brigham and Women’s Center for Neurological Imaging, focusing on the temporal effects of Multiple Sclerosis. His main interest is in neuroradiology, particularly in neurodegenerative diseases. It is probably safe to say that Max is where he is because of his experience with his great grandma.

According to the Alzheimer’s Foundation of America, someone is diagnosed with this disease every 67 seconds, and experts believe these numbers could double or triple in the next 20 years. That means the lives of many children and grandchildren are going to be touched by this disease.

When Alzheimer’s or another dementia pays an unwelcome visit to a family, what should we tell children about their granddad’s seemingly ignoring them or their grandma’s inability to remember their names?

I believe the best approach is simple honesty. Use age-appropriate explanations they can understand, such as, “Nana still loves you but sometimes she cannot remember your name.” It is beneficial to be straightforward in answering questions as well as to listen when children express concerns. Dr. Richard E. Powers, a geriatric psychiatrist, advises: “It’s much better for you to shape a positive message than for children to make false assumptions.”

If a grandparent does or says something hurtful, remind the child the behavior is due to the disease and does not indicate their grandparent’s feelings toward them. Teach them to be kind and respectful, even when those actions are not reciprocated. 

By all means, continue relationships and family activities as much as possible. Make delightful memories. Look for opportunities to involve children with simple care tasks such as reading to or feeding the care receiver. I know a man in his seventies who has never forgotten the lessons he learned as a young boy when he was given the responsibility of feeding supper to his invalid grandmother every day after school. Participating in providing care for elderly family members is a great way to develop character qualities such as empathy and kindness. 

On the other hand, young children should be protected from bearing heavy worries regarding caregiving. Let them be children. Make an effort to keep their lives as normal as possible, especially when the care receiver lives in your home. There should be special family times that give the parents and children a respite from caregiving duties. 

Look for resources, such as the book mentioned above, that will help children have a better understanding of what it is like to share your home (or visit in a facility) with someone who has Alzheimer’s. As the disease progresses, continue the conversation and explain what is happening in the present as well as what can be expected in the future. 

In the beginning, changes in behavior may not be obvious to a child, but as the degree of cognitive deterioration increases, it will be helpful to give guidance for interactions, such as using simple sentences and refraining from too much activity (yelling, jumping around). In later stages, children should be taught to always introduce themselves and that communication may be limited to non-verbal means such as touch. Hugs and kisses are almost always appreciated!

Monitor your child’s behavior for any troubling changes (such as avoiding friends) and address them right away. One more caution – if your child expresses genuine fear about being in the presence of a grandparent with Alzheimer’s – do not coerce him. Ask him to tell you what bothers him and attempt to allay his concerns. Let him know you understand; because, after all, who reading this has not at some time experienced fear at the mention of Alzheimer’s? 

Lastly, if your family is called upon to provide care for a grandparent, consider it a privilege. With the right attitude, the experience can be a positive life-changing one.