How to Explain Alzheimer's Disease to Children
I am so pleased to share this guest blog post from Laurie Zelinger, PhD, ABPP, RPT-S, author of the Please Explain to Me book series.
Before we jump into the guest blog post, I want to share my review of Dr. Zelinger's newest book Please Explain Alzheimer's Disease to Me: A Children's Story and Parent Handbook About Dementia:
Finally! A book to explain Alzheimer’s disease to children in an easy-to-understand, developmentally appropriate manner! As a nurse and mental health counselor, I know how much this book is needed, as Alzheimer's disease impacts almost 6 million adults. Please Explain Alzheimer’s Disease to Me not only offers children a chance to understand the many changes that a loved one may experience due to Alzheimer’s disease but also offers resources for adults to have meaningful conversations with their child.
Zelinger's book even includes a kid-friendly explanation of the changes that happened in the brain because of Alzheimer's disease! There are many changes children need to understand and adapt to when a loved one has Alzheimer's disease, and Please Explain Alzheimer’s Disease to Me is a gentle and realistic way to begin those difficult conversations. Parents will find the tips for families, and the question and answer section, especially helpful.
Introduction by Dr. Zelinger
When I was growing up, my family used to say that my grandmother was forgetful. Then they broadened their description and said “confused” and then “senile”. I didn’t really understand those terms but I knew I didn’t like them. Grandma Anna was changing. She couldn’t take care of herself or her apartment anymore, and she would wander and get lost when she went out alone. Although she went to live with my cousins for a while and then came to live with us in our small apartment, they weren’t long term solutions. One day, Grandma moved into supervised living setting, which I thought of as an ‘old age home’. I was scared to visit her there because I didn’t know how she would be each time I went and I didn’t want to see the other old people who made strange noises and looked different. I especially didn’t like that Grandma talked to me as though I was someone else. I didn’t know how to act when I was with her, and I didn’t like how she was acting.
That was my introduction to dementia. Thirty-five years later, my mother developed the same disease.
Alzheimer's Facts And Figures
Most people are familiar with the term ‘Alzheimer’s, which comes under the broad heading of ‘dementia’. There are several other forms of the disease, but Alzheimer’s is the most well-known, accounting for 60-80 percent of cases of dementia. Last year, 6 million people in the United States were living with it and worldwide the number is reported to be about 50 million (Park, 2016; Kivipelto & Hakansson, 2017). Dementia is a brain disease that includes a specific group of degenerative symptoms that include memory loss, problems with language, thinking, reasoning, attention, planning and judgment. It is often accompanied by personality changes and a decline in overall functioning that impairs a person’s ability to function in daily life (Alzheimer’s Association Report, 2020; Arvanitakis & Bennett, 2019; Mayo Clinic, n.d.). Alzheimer’s disease is not a normal part of aging. Although it more often affects people over age 65, early onset affects about 200,000 adults under the age of 65. The cause is not known, however genetics and family history are contributory.
There is no cure for Alzheimer’s disease, a degenerative disease that leads to ultimate deterioration of all faculties. On average, individuals live 4 to 8 years after being diagnosed and by age 80, 75 percent live in a nursing home. While dementia cannot be reversed, there are 5 medications on the market which may be helpful in slowing its progression and others which can address the often troubling behaviors that accompany it.
The average lifespan of any individual in the United States surpasses that of the rest of the world by about 8 years. Those years of extended life translate into a sharp rise in cases now that the baby boom generation is aging. As such, the likelihood is great that you will soon know of somebody with dementia. It is estimated that 25% of people caring for an individual with Alzheimer’s disease are also caring for children, supporting the phrase, ‘the sandwich generation’. That means that you may one day be in a position where you will have to explain what Alzheimer’s disease to a young child.
About the book: Please Explain Alzheimer's Disease to Me: A Children's Story and Parent Handbook About Dementia
As a child psychologist for over 45 years, I try to help children understand the events they think about, and navigate the obstacles that stand in their way. Understanding and explaining Alzheimer’s disease is one of those topics that parents usually don’t attempt unless they have to. It is unknown territory for most families and can be difficult and anxiety producing. Figuring out what to say to a child is often a baffling prospect. That is why I wrote this book. Please Explain Alzheimer’s Disease to Me is based on: scientific research, my own personal experience, and my vast knowledge of children and families. The first half of the book is a colorful story for children, with a storyline and illustrations that will engage children in the 6-9 year old range. The second half is a guidebook for parents, which addresses information that adults need to understand the disease as well as scripts they can use with children. Family resources and a rich bibliography are also included. Excerpts from the book are summarized in the passages below.
Speaking with your child About Alzheimer's Disease
Children take their cues from the adults they trust. When having an important conversation with your child about a sad subject, your goal should be to impart only the amount of information they need, and to help them digest that information while you also gauge their body language and verbal comments for any emotional reactions. To boost the success of that moment, consider the following recommendations:
1) Set aside time when you won’t be rushed or distracted. Choose a place to talk where your child is physically and emotionally comfortable. Make sure you are accessible for questions in the hours to follow.
2) Give only minimal and basic information- your child will ask for more if they want it. Say little and listen more because their comments and questions will lead you in the direction to go. You might want to ask them to repeat the information back to you, to see whether they processed it accurately. Or “challenge” them to ask one hard question about what you just talked about.
3) Allow your child to express their feelings, even if it creates difficult and uncomfortable moments or is not what you want to hear. If you interrupt, judge or shut your child down, they may feel this is a taboo subject and will be reluctant to discuss their worries in the future. Be understanding about the anxiety and fear they may be experiencing. Give them words to label their feelings. It is also alright for you to say how you feel but be careful not to unburden yourself as you would to another adult. If your child asks you questions that you can’t answer, it is perfectly fine to say that you don’t know.
4) Be honest, yet reassuring. Find something positive to include as you describe how your loved one is doing. For example, “Grandpa is sleeping most of the time nowadays when I visit him but the picture you drew for him was hanging right over his bed. I bet he loves looking at it. I think it makes him feel happy.” “Grandma was wearing the earrings that she wore on Thanksgiving that you liked so much. You’re right; they really are pretty on her.”
5) Help your child find a way to feel useful so they feel some sense of control when they see the adults in their world looking preoccupied. Perhaps they can go with you to buy scented bath soap for grandma or pick flowers for her room or help make pudding to bring her. Help them think of something they can do so they feel like they are making a difference.
How to Answer Kid’s Questions About Alzheimer's Disease
Children often wonder what is going to happen. Please Explain Alzheimer’s Disease to Me provides sample responses to the following questions:
What’s wrong with Grandma/Grandpa?
Will Grandma/Grandpa get better?
Does Alzheimer’s hurt?
Can I catch Alzheimer’s?
I don’t want to see Grandma/Grandpa. Do I still have to visit them?
How come Grandma/Grandpa keeps saying the same things over and over again and calls me by a different name?
What does Grandma/Grandpa’s helper do?
What should I do when Grandma/Grandpa makes a mistake?
I’m afraid of Grandma/Grandpa because they have been yelling a lot. Are they going to be violent or hurt me?
How come Grandma/Grandpa needs a wheelchair?
What’s going to happen to Grandma/Grandpa?
Is Grandma/Grandpa going to die?
There is no definitive response that is perfect for all situations, but it is my hope that the text in the parent section will supply you with enough information and confidence to do take this on as you attempt the first, of probably many conversations, about your loved one with dementia. Being honest, patient, reading your child’s cues and pacing your discussion to accommodate their feelings, will likely offer the best outcome to this difficult task. Trust yourself, as you know your child best.
Here is a sneak peek at a few pages from the book Please Explain Anxiety to Me!