Dementia has widespread impacts on the entire family, so talking with children and adolescents about dementia when a loved one is diagnosed is critical.
With the holidays approaching, families will be spending more time together. Children may be visiting loved ones whose dementia has progressed since they were together last. The James L. West Center for Dementia Care’s free education session, “Communicating with Children, Adolescents and Families about Dementia” is a valuable resource for preparing children, teens and adults to spend time with a loved one with dementia.
Sally Stockett, a recent graduate of the University of North Texas Health Science Center Masters of Public Health Program, developed the new educational program with the James L. West Center’s education team.
Dementia is an umbrella term for progressive conditions characterized by memory loss, confusion and trouble with abilities such as problem-solving, language and reasoning. Dementia is widespread in the United States and globally with Alzheimer’s disease being the most common form.
“Not talking about what’s happening can create strain on family relationships,” said Stockett, whose parents tried to shield her and her brother from her grandfather’s diagnosis.
“It can be reassuring for children and adolescents to know and understand what’s going on in the family, and it can negatively impact their relationships if they’re not told the truth about what’s happening,” Stockett said.
The importance of talking to children about dementia
Children are good at picking up on situations around them that are tense or unusual, even if they don’t know what’s going on. Being open and honest about what’s happening is often the best course of action.
Life Course Theory is the idea that each stage of life influences the next. Our social, economic, and physical environments have profound influences on our health and how we cope with challenges or difficult situations as adults.
Adverse childhood experiences and trauma are associated with health outcomes. More adverse childhood experiences lead to more adverse health outcomes as adults.
“Children learn by watching how their adults deal with difficult situations,” Stockett said.
Teaching children healthy coping mechanisms prevent future risk behaviors, such as unhealthy eating habits, smoking, and drug or alcohol use. Poor coping mechanisms contribute to anxiety, depression, social isolation and chronic illnesses.
Answering difficult questions
Children are curious. They ask lots of questions, sometimes tough ones.
- Why does grandma/grandpa keep calling me Timmy? My name is Michael.
- Why does grandma/grandpa keep asking the same question?
- What’s wrong with grandma/grandpa?
- Why doesn’t grandma/grandpa remember me?
- How can I help grandma/grandpa?
- Why do you see grandma/grandpa every day after work? Can’t you come to my soccer games instead?
“These are hard questions that parents often don’t have answers to,” Stockett said.
Sometimes the simplest answers are the best. Keep answers age-appropriate and avoid using medical jargon that children will struggle to understand. Leave space so they can ask a follow-up question if they need to.
“Grandma’s brain is changing. She may forget a lot of things, but she can still feel your love.”
“Grandma has a disease that affects how her brain works and how she thinks. It’s called dementia. The brain controls everything we do, so a person with dementia may have a hard time thinking, remembering, or talking.”
“You can help grandma by being there. Love and kindness can still be felt and are very much appreciated.”
One of the awesome things about dementia is while the person’s abilities may be changing, they can still feel love and kindness, Stockett said.
Telling children about a dementia diagnosis
In general, families facing a loved one’s dementia diagnosis should start talking with children and adolescents about dementia as soon as possible. The specifics of how and when to tell will vary from family to family.
While withholding the information may feel like you’re protecting your child, they will sense that something is different or wrong. Honesty is usually the best route to maintain trust in your relationship.
Depending on the stage of the disease, a person in early stages may wish to tell grandchildren about the diagnosis themselves. Otherwise a parent or other trusted loved one should be the one to break the news.
With younger children, be clear and use words that are easy to understand. Avoid medical terms and explain as simply as possible what is happening to their loved one. Offer space for questions, and let them feel their emotions. Young children may be sad, curious, confused, frustrated or worried.
Adolescents are already going through a lot. Be patient with them. Keep the lines of communication open and normalize their feelings. Adolescents may be afraid, feel useless, feel stressed or rejected, or experience guilt.
Encourage them to spend time with their loved one and do things they can enjoy together to maintain connections. The following is not a comprehensive list, but may be a helpful place to start:
- Baking
- Puzzles – jigsaw, Sudoku, word search, crosswords, etc.
- Gardening
- Coloring or crafts
- Look through photo albums
- Listen to music
- Play with animals
- Watch videos
- Play simple and appropriate games
Talking about death and dying
Dementia is a progressive, terminal disease with no cure. While it may be natural to want to protect your child from death, being honest about what’s happening is important.
“The death of a loved one is painful, and for children, it can be confusing,” Stockett said.
Do not hide the truth or delay telling your child that their loved one died. Young children may not understand that death is permanent and may ask when their loved one is coming back. Be patient and empathetic.
As they get older, children begin to realize death is permanent, and they may experience anger, sadness or frustration. Give them time and space to feel these big emotions and reflect.
But perhaps most importantly, it’s OK to grieve in front of your children. Let them know you have big feelings, too, and show them healthy ways to deal with grief.
Stockett recommends several children’s books that may help parents handle these difficult topics:
- Grandma Has Dementia (Alex Winstanley)
- Grandpa Forgets (Suzi Barned-Lewis)
- The Tide (Clare Walsh)
- Grandma, It’s Me! (Y.Y.Chan)
- The Memory Box (Joanna Rowland)
- What is Heaven? (Maria Shriver)
Hollie Glover, director for education and family support, says the books are among her favorites for talking with children and adults about dementia, death and dying.
“Many of these tips can also apply to talking to your adult children about dementia,” Glover said.
The James L. West Center offers free dementia and caregiving sessions on demand, virtually and in person for family caregivers. Learn more about the available resources, or check out upcoming in-person and virtual sessions on the Education Calendar.
