"When I was a young girl and first heard about Alzheimer’s disease, it scared me. I don’t even know how I came to know the term at such a young age, but I do remember being frightened. While I didn’t personally know anyone affected by this tragic disease, all I could think about was my beloved grandmother and the idea of her not knowing who I was. It terrified me.
Now as an adult and a mother myself, I am prepared to tackle these tough conversations. I want my daughter to be aware of things in the world—the good and the bad. While I have been very lucky in my life not to know anyone who has been diagnosed with Alzheimer’s, it is something many parents need to be prepared to discuss as relatives age. According to the Alzheimer’s Association, more than 6 million people are living with Alzheimer’s, and with an average diagnosis of 500,000 cases a year, as many as 1 in 3 seniors can die from this devasting disease.
Here, we carefully break down how to talk about Alzheimer’s disease with your children.
How to Explain Alzheimer’s to Children
Tyler Maceachran, Executive Director of the Alzheimer’s Caregivers Network, a non-profit organization that offers resources and support to family caregivers to those with Alzheimer’s Disease, was a child when his grandmother was diagnosed with Alzheimer’s disease. “I remember over the years of the disease progression visiting in my grandparents’ home, then in a nursing home,” said Maceachran. “The important thing is to talk early and often about Alzheimer’s disease in an age-appropriate way the child can understand. Remember, kids are sponges. Every parent knows that they pick up on everything, so they are going to understand that things are different and a little scary. Don’t let them fill in the blanks themselves. Have open conversations so you will be aware of what they understand, misunderstand, or are fearful about.”
Don’t let them fill in the blanks themselves. Have open conversations so you will be aware what they understand, misunderstand, or are fearful about.
Another important point to make clear to your children comes to us from Maria Shriver, co-founder and CEO of MOSH, who lost her father to Alzheimer’s disease. “Having gone through a global pandemic in which older adults were more vulnerable, many children coping with grandfathers or grandmothers who have Alzheimer’s disease worry about whether their parents will catch it,” said Shriver. “It’s important to reassure them that it isn’t contagious like COVID-19 or even the flu. Explaining the basics of Alzheimer’s will help them understand what it is and how it progresses.”
Shriver encourages parents to keep the conversation going because when someone has Alzheimer’s, their personality and behaviors keep changing. “You have to keep talking with your children about ways to interact with and help care for your loved one as the disease progresses.”
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How Do We Tell a Child a Loved One Has Alzheimer’s?
When a loved one has been diagnosed, our first instinct may be to shield children from reality to save them emotional pain. But Maceachran says that is not the right way to go about it. “It’s best to give them an accurate understanding of what’s going on and what to expect—including the fact that while the disease is impacting their loved one’s abilities and memories, they will always love the child.”
Raymond Dacillo, Director of Operations for C-Care Health Services, said that Alzheimer’s can be an incredibly complicated condition that can be difficult to explain. “Children will start to understand when their loved one is starting to act differently” said Dacillo. “When they ask why the loved one is acting a certain way or if parents know the condition is present, it is so important to let the children know as soon as possible so that they are not confused about what is going on.”
How to Reassure a Child
Nancy Mitchell, a registered nurse and contributing writer at Assisted Living says that Alzheimer’s can be a nerve-racking situation to unpack for a child. “Above all, remind your child that Alzheimer’s is a condition that affects the mind, but it doesn’t change who the person is to them,” said Mitchell. “For one, your loved ones need as much support as they can get at this time. But the desensitization will also help your kids develop more empathy toward the situation and for those around them.”
When dealing with children who may be close with someone who has Alzheimer’s, we must be extremely sensitive to their feelings. Dacillo said to be sure to give children a safe space for their emotions to allow them to process what they are feeling about the situation. “Once they are more accepting of the situation, you can then guide them through some practical steps and tell them what it is like for an individual to live with Alzheimer’s.”
Books to Help
Since Alzheimer’s is such a sensitive subject to discuss with children, there are multiple books out there to help parents with this tough conversation.
For Kids
Dancing with Grandad: An Alzheimer’s Story for Children and Their Families, released by the Alzheimer’s Foundation of America, takes young readers on a journey with Nia, a 7-year-old girl, whose grandfather has Alzheimer’s and will need to move to a new home where he will be safer. The book also includes a message from the Alzheimer’s Foundation of America about how to introduce a conversation with children about Alzheimer’s disease. Shriver’s family went through the experience of witnessing her father slowly lose his mind to Alzheimer's disease, which inspired her to write this book.
For Grown-Ups
Another book that covers this subject is My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver. It is an honest and heartfelt reflection written by Former Wisconsin Governor and Alzheimer's caregiver Marty Schreiber on what he's learned loving and caring for his wife.
The most important thing when discussing Alzheimer’s disease with your child is to assure them that even though a loved one may be diagnosed with this tragic disease, their memories of their loved one will always be there. Even though their relationship going forward with this loved one may change due to a diagnosis, their love will remain the same, as will memories once shared together.
