Author Jean Demetris shares tips for families on how to explain dementia to children and help them better understand the disease. Her book, “Grandma’s Box of Memories,” speaks to children aged 4-7 years, and prompts a discussion about what they can do to be involved in the care of a loved one with dementia. Learn more about her experience with the disease and about her book for children, below.
Coping with a Dementia Diagnosis
At the age of 64, and just one year before he was due to retire, my husband George was diagnosed with Parkinson’s disease.
For two years, his condition was controlled successfully with medication. However, he began to hallucinate and often experienced the sensation of people standing near him. This grew stronger, until it was established that he was suffering from Lewy Body Dementia.
As the years progressed, his condition became more intense. The hallucinations became more troublesome, often grotesque and disturbing. His memory became muddled; making it difficult to perform everyday tasks. In addition, his physical condition deteriorated and his fine and gross motor skills became more unsteady. It wasn’t long before he needed care, for almost 24 hours a day.
Eventually, six years after being diagnosed with Parkinson’s and Lewy Body Dementia, he became a resident in a nursing home specialising in the care of seniors with cognitive and mental health problems, including dementia.
The nursing home provided excellent care for him in terms of physical comforts and medical needs. The staff were experienced and caring, however they had little time to provide sustained stimulating activities. This fell to the inventiveness of family and other visitors to provide.
It was during these visits, that I observed the differences in the input that visitors were able to provide to loved ones. More so, I noticed that young children visiting older family members were often reluctant to engage with them. It was here, that my years of experience as a reception class teacher took over.
Helping Children Understand Dementia
Coping with dementia is distressing for everyone involved, including children. It is natural for an adult to want to protect the child when it comes to a dementia diagnosis, yet it is important to explain what is going on in a clear and calm way. The child needs reassurance that adults are there for them, and that they will be offered a discussion that includes the encouragement to ask questions about the disease.
The child should understand that dementia cannot be cured, but that there are still ways that a child can help the person feel loved and wanted.
In my research, I found that there were material for adults on dealing with children in such a situation, but that the material available for children to help children understand and deal with the condition was extremely limited. This gave me with the idea to write a book about how young children can be more involved in the welfare of a family member with dementia.
The result was: “Grandma’s Box of Memories: Helping Grandma to Remember.” The book’s title refers to the box in which the main character Alice — and her family — create a box of memories to remind grandma of all the good times they shared together.
The book attempts to address some of the issues Alice faces when her Grandma is diagnosed with dementia. Alice talks with her dad and explores ways in which she can help her grandma. She involves all the members of the family, and asks them to select a favourite item to put in Grandma’s box. All of the chosen items have a personal relevance to Grandma and the family member. For instance, in the book, Alice puts some pretty packs of seeds into the box to remind Grandma of their happy times planting seeds and watching them grow into beautiful flowers. Alice’s mum, dad, brother and sister add to the box as do other family members.
“Grandma’s Box of Memories” is written for children; it has a degree of repetition to assist in the reading process and employs anticipation as a means of encouraging the reader to ask him or herself what might be on the next page. The narrative ends with an invitation for children to add their own ideas, and prompts discussion and personal thoughts.
I worked closely with my son, Alex Demetris, who did the illustrations for the book. For this I thank him.
We hope that the book is useful to both adults and children who have to deal with a difficult situation and that it brings them some understanding, laughter and love while dealing with dementia.
Have you had an experience helping children better understand dementia? We’d love to hear about it. Share your story and tips with us in the comments below.
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