Luisa Echevarria remembers not understanding why her grandmother's behavior suddenly changed.
"I was always very tuned into the adults," she said, recalling hearing her uncle and mother mentioning her grandmother was acting differently. "I started to notice these things, too, but in my child's mind I didn't know how to wrap my head around what's happening."
Echevarria was about 7 years old when her grandmother began showing signs of Alzheimer's. Both her grandmother and mother had the disease.
Echevarria, who is on the board of the Alzheimer's Foundation of America, says it can be hard to know how and when to talk to children about a family member's diagnosis of dementia.
The Alzheimer's Foundation of America recently published a book for families, "Dancing With Granddad: An Alzheimer's Story for Children and Their Family." It follows 7-year-old Nia as she sees her grandfather becoming confused, wandering in the middle of the night, retelling stories. Her parents speak with her about the changes and eventually explain how he will move to a new home where he can be safer.
Jennifer Reeder, director of educational and social services at the foundation, says it is important to include the person who is diagnosed in conversations about the present and future.
"I'm sure some people would want to be part of the situation," she said, especially if it is in the early stages and they feel they are able to effectively communicate.
Ask if they want to be involved and important points that they want the child to know. It might be something like, "If I'm having a bad day, and I seem really cranky, it's the Alzheimer's that's making me cranky, it's not you."
"They can really help the child know that the disease is really separate from them and even though they're going through changes, the love that they have for them, that will never change," Reeder said.
She added, "You never want someone to experience the negative as being their loved one. It's the disease, and that's why you really want to help them be able to separate the two."
Lou Becker understands this. His wife, Loretta Becker, first experienced memory problems and other symptoms of her Alzheimer's two decades ago.
They have not hidden the diagnosis from family members, and their grandchildren have handled it well, he said. When Loretta Becker moved into a memory care facility last year, her grandson helped decorate the walls with family pictures. Since the COVID-19 pandemic began, their visits have been restricted, but they were recently able to have an outdoor visit.
Lou Becker said his grandchildren are bright and perceptive. There's always been an understanding of the diagnosis and what it means for their grandmother.
"There's never been any difficulty over it with either of them," he said.
It's not only grandparents that might be impacted. Many people are having children at older ages, meaning kids might be young when a parent is diagnosed with some forms of dementia. Frontotemporal dementia, for example, usually begins between the ages of 40 and 65.
"That's where it can be really emotional and difficult for families, because someone all of a sudden might start appearing frustrated and agitated, and their personality changes completely," Reeder said.
Echevarria said when her mother began showing signs, they talked to nieces and nephews, who asked things like whether she was going to get better. She explained it was a disease that would progress.
"Children can understand and accept a lot more than we give them credit for, but it's really important to be honest and to be clear about what's happening," she said.
Parents can begin with a tool like the Foundation's book, and ask questions like, "Does the grandfather in this book remind you of anyone?" or "Have you noticed that grandma is different too?" Adults can ask children how they feel about these changes.
Remind a child not to take any changes personally, such as when the family member forgets a name or asks the same question. Tell them the person is doing the best he or she can and cares about them as always, even if it is not expressed in the same way.
Some tips for children, while interacting with the family member, include reminding the relative who you are and the reason for the visit — that you are there to draw a picture or tell a story, for example. Make sure to speak slowly, giving the family member time to respond.
Children might be able to sense that something is strange, but not know how to process it. Open conversations can reduce stigma and shift the focus to managing and supporting the family member.
"There's always fear of the unknown," Reeder said. By having a proactive conversation with children, she said, "They never become fearful of what's going on."