When a senior develops Alzheimer’s disease or another form of dementia, it impacts their whole family—even the youngest members. Children may be confused, frightened or upset by a dementia patient’s symptoms and unusual behaviors. For example, a grandchild may struggle to understand why their grandparent no longer remembers them, accuses them of things they didn’t do, cries uncontrollably or disrobes in front of them.
Even adults have a difficult time making sense of the way dementia affects the mind and body and determining the best way to cope with new and worsening symptoms. How parents handle the situation directly affects how kids view the disease and how—or if—they interact with their grandparents.
Deanna Lueckenotte, author of Alzheimer’s Days Gone By: For Those Caring for Their Loved Ones, believes that families should talk openly about the disease and how it impacts their loved ones instead of shielding children from this reality. When Lueckenotte was young, her grandmother was diagnosed with Alzheimer’s disease. These childhood experiences with her grandma are what inspired her to pursue a career in geriatrics and dementia care more than two decades ago. Lueckenotte offers the following pointers for teaching kids about dementia.
Tips for Talking to Kids About Alzheimer’s Disease and Other Dementias
Use Honest, Age-Appropriate Explanations
There is still a great deal that we do not understand about dementia from a medical standpoint, so finding a way to explain this condition to a child can be daunting. The best place to start is by providing a very simple definition of Alzheimer’s disease that focuses on a few key characteristics:
- It is a disease that affects how the brain works.
- It is not contagious.
- Symptoms like memory loss, disorientation, difficulty communicating, and changes in mood and behavior will worsen over time.
- There isn’t a cure for Alzheimer’s, but there are some treatments that can help improve certain symptoms.
Parents can provide more or less details, depending on the child’s age and degree of comprehension. With younger children, explain that grandma or grandpa’s brain is sick. Say that just as children can get colds and tummy aches, some older adults may get an illness that causes them to act differently and forget things. They may look the same on the outside, but inside their brain is changing.
Encourage Communication
“Kids notice more than we give them credit for,” Lueckenotte admits. “It’s important not to shelter a grandchild from the realities of Alzheimer’s, because open dialogue can make the disease less scary.”
Encourage kids to ask questions and talk about the disease, their feelings, and their concerns. If their grandparent is in the earlier stages of the disease and still able to field questions, he or she should also speak openly about their condition.
Get Ahead of Guilt
Dementia-related behaviors and mood swings frequently catch adults off guard and take an emotional toll on family caregivers. Kids are susceptible to internalizing a dementia patient’s words and actions as well. For example, if grandpa yells at his grandchild or makes false accusations, they will wind up thinking they did something wrong. It’s important to address outbursts like these head on. Help children understand that they are not at fault and there is nothing to feel guilty or bad about. Grandpa isn’t at fault either because he isn’t fully in control of his words and actions. Instead, it’s the disease causing him to do and say strange and hurtful things. Grandpa can’t remember things, which is scary and makes him upset.
Teach Dementia Care Techniques
When Lueckenotte was a child and her grandmother experienced hallucinations and delusions, the prevailing dementia care philosophy was to offer corrections and bring patients back to reality. However, our understanding of Alzheimer’s disease and how to interact with dementia patients has changed a great deal since then. Instead of “reorienting” patients, validation and redirection are the preferred techniques for handling difficult behaviors.
“If grandma thinks she is at the family farm in Kansas, correcting her or arguing with her only causes more confusion, fear and anger,” Lueckenotte says. “Park your reality at the curb, and enter theirs. If they claim to see purple dancing elephants in the room, then you see purple dancing elephants, too.”
Again, drive home the fact that grandma’s brain isn’t working properly and is causing her to see and believe things that are not real or true. Explain to kids that validation is an opportunity for them to use their imaginations and see the world through grandma’s eyes.
Read: Is Using Validation for Dementia Calming or Condescending?
Involve Kids in Caregiving
The extent of a child’s involvement in caregiving mainly depends on their age and where their elder lives. If a grandparent with Alzheimer’s lives with you or close by, then there is bound to be more opportunity for participation in their care. Letting children play a role in daily routines can help them get more comfortable with the changes in behavior brought on by Alzheimer’s.
Remember, “help” comes in many different forms. At home, young children can assist their grandparents with household chores, such as dusting, setting the table or raking leaves. If the grandparent lives in a senior living facility, kids can be a meaningful source of companionship. Plan simple activities they can do together, such as listening to music, playing games, or doing puzzles or crafts during visits.
Elder care expert Carol Bradley Bursack found ways of including her two sons in caregiving when her father came out of a failed brain surgery with dementia. He was unable to care for himself and plagued by hallucinations and delusions, so the decision was made to place him in a nursing home. The whole family struggled to make sense of this sudden and drastic change, especially her boys who were young teenagers at the time.
“My sons learned that bringing their musical instruments to the nursing home to play for their grandpa was a way they could visit without the discomfort of trying to have a coherent conversation with him,” Bradley Bursack recalls. “At that point, the man who taught his grandsons how to play chess often talked with someone who existed only in his brain. However, music was soothing and always appreciated. This showed the kids that they still had a bond with their grandfather.”
Keep in mind that some kids will be able to pitch in and help care for their loved ones, instinctively understanding how to soothe or help. However, each child is different and others will be too confused or frightened to have more than basic contact. Give kids options to help, but don’t force them to take on more than they are capable of or comfortable with.
Stress the Importance of Respect
Respect is a very important factor in caregiving. Unfortunately, respect is not always mutual between caregivers and care recipients, especially when dementia has distorted a senior’s thoughts, judgement, behaviors and moods. It is crucial for children to understand that disrespect of any kind will not be tolerated—even if their grandparent is the one acting out due to their condition.
If grandma or grandpa is having an outburst, gently explain that you’ll visit with them later once they’re feeling a little better and then remove the child from the situation. Emphasize that their grandparent’s words and actions should not be taken personally due to special circumstances but that they do not need to endure abusive or inappropriate behavior. Tell the child to leave the room and find an adult if they ever feel uncomfortable or disrespected.
Keep in mind that even if a dementia patient is reprimanded and their caregiver sets firm boundaries, they may not remember acting out or be capable of controlling their behavior. Dementia patients who are easily agitated, abusive or inappropriate should have limited contact with young children that is fully supervised—ideally during times when they are calmest.
Seek Out Support
Whether you reach out to your family members and friends, a mental health professional, or a caregiver support group, it is important to remember that there are plenty of supportive resources available to you. If you still feel like you need some help talking about Alzheimer’s with your child/children, look for age appropriate books on the subject. The Alzheimer’s Association has compiled a list of children’s books on Alzheimer’s along with other educational materials that can help guide your conversations.
If there is no support group in your community for children with grandparents who have dementia, talk to their school guidance counselor, your local Area Agency on Aging (AAA) or your local Alzheimer’s Association chapter to see if a group can be started. In this way, children are no different than adults. They need to know they aren’t alone in coping with this devastating disease and the emotional challenges that come with it.