How to Talk to Children About Alzheimer’s Disease and Incorporate Them into the Care
In this time of baby boomers aging and early onset Alzheimer’s disease on the rise, it’s important for everyone, including children, to be educated about the disease so that those with the disease will be treated with respect and understanding. Everyone deserves to live the highest quality of life possible and this is particularly important for people with progressive diseases like Alzheimer’s or any type of dementia.
Any child could become a caregiver. Therefore, it’s important to break down stigmas by providing knowledge and a toolkit of tips and activities for every stage of the disease. Being equipped with information helps children and the whole family maintain meaningful relationships with their loved one who has Alzheimer’s. Strive to help the loved one live the highest quality of life possible throughout the difficult course of the disease.
The first step in talking to children is to address the big question: What is Alzheimer’s disease? As an example of what happens in the brain of someone who has the disease, instruct the child to identify all the steps it takes to satisfy thirst. First, they need to decide what they’d like to drink. Let’s say they decide on milk. Steps include going to the cupboard, reaching up, getting the glass, going to the refrigerator, choosing the milk, and pouring the milk. Explain to the child that at any step, the brain in someone who has Alzheimer’s can get confused and forget what to do next to satisfy their thirst.
To further demonstrate to a child what happens in the brain of someone with Alzheimer’s seeking to satisfy thirst, put a cup of dry cereal in a bowl. Tell the child the cereal represents the person’s brain cells. For every step in the task of getting a glass of milk, direct the child to take out a spoonful of cereal. Just as there is less and less cereal in the bowl, point out that the brain becomes less and less able to function properly as Alzheimer’s progresses. If most of the cereal disappears before the step to pour the glass of milk, the person’s process of satisfying thirst has been interrupted, and that need goes unmet.
This disruption to thought processes can happen during any task. Imagine how frustrating that must be, and then imagine the potential dangers of, for example, forgetting to turn off the stove or getting lost while driving.
The second step in talking to children about Alzheimer’s is to help them face any fears they have about the disease. Examples of common questions they have are: Will Grandma and I ever be able to have fun again? Can I get Alzheimer’s disease from Grandpa? Will my Aunt remember me?
Answering their questions will help children feel more comfortable interacting with a loved one who has the disease. Impress upon them that not everyone gets Alzheimer’s as they age, and it’s not the end of sharing love and happiness with that person.
In the mild stage, the cognitive change is hardly noticeable. Therefore, children can still have fun with their loved ones. However, explain that some activities might need to be modified as the disease progresses. For example, substituting a game of checkers or another board game for the usual game of chess might be more enjoyable for Dad or Grandpa post-diagnosis.
Assure children that Alzheimer’s isn’t contagious like the flu. They can still hold hands and show affection just as they did before the disease. Touch is so important in promoting overall well-being.
Interactions with a loved one who has Alzheimer’s are more likely to be successful when the child (or anyone) always starts by introducing themselves and stating their relationship to that person. For example, “Hi, I’m Amelia, and I’m your granddaughter.” It’s amazing how this sets a tone of trust with the loved one, indicating that you are someone they know.
Maintaining meaningful relationships across generations is beneficial for most families. However, it’s particularly important for families living with Alzheimer’s. Connection leads to feeling secure. Children need this connection, and so do people who have Alzheimer’s or any type of dementia.
Here’s a list of fun activities children can do with a person in the mild stage of Alzheimer’s:
Play familiar games or create a game of making up words and phrases, because a person with Alzheimer’s often makes up words or phrases.
Go for a walk or go on a picnic.
Sing and dance – it’s amazing how singing a familiar song can cheer up, redirect and bring joy to the person.
Make up songs with the person who has Alzheimer’s.
Make music together.
Read together – people with Alzheimer’s enjoy children’s books.
Draw and color together.
Make a memory book of photos, recipes, favorite sayings, etc. that will help the person tap into their long-term memory which is more accessible than their short-term memory. The memory book will be useful throughout the course of the disease.
Here’s a list of situations when you, as the responsible adult, need to intervene:
Guiding a person with Alzheimer’s who is lost
Encouraging children to let you know when the person with Alzheimer’s has put things in strange places, left a burner on, dressed funny, or any other activity that seems unusual
Giving children chores to help you, the person with Alzheimer’s, and the family
Comforting children when they are frightened by the behavior of the person with Alzheimer’s
Encouraging children not to laugh or make fun of the person with Alzheimer’s
Encouraging children to be quiet around the person with Alzheimer’s
Encouraging children to share their feelings of fear, anger and sadness
Helping children understand the person with Alzheimer’s is the same person they have always loved
Informing children that it’s the disease, not the person, that’s causing the strange behavior.
As the disease progresses, the behaviors of the person with Alzheimer’s intensify. In the moderate stage, children and the person with Alzheimer’s need more supervision than in the mild stage of the disease.
A sensory deprivation activity is effective in teaching children compassion. Smear some old glasses with Vaseline to obstruct vision. Put cotton balls in their ears to decrease hearing. Place mittens on their hands to decrease their tactile abilities. Instruct them to put their toys and clothes away, make the bed, put on something with buttons or a zipper, and eat their snack while their senses are inhibited.
Remove the glasses, cotton balls, and mittens and talk about how it felt to have vision, hearing, and tactile deficits. Could they remember all they were instructed to do? Explain to them their loved one who has Alzheimer’s is experiencing many of these deficits regularly. Once children are aware of what it feels like to have Alzheimer’s, or any type of dementia, they are more likely to be empathetic toward loved ones living with it or any other type of disability.
Here’s a list of fun activities for children to do with someone in the moderate stage of Alzheimer’s disease:
Spend quiet time at a favorite place, because the person with Alzheimer’s feels safer in a familiar place.
Read to them or look at pictures together because the person may not be able to read anymore.
Do an easy repetitive task together like folding clothes, sorting fruit or washing dishes.
Provide the ingredients for children and a person with Alzheimer’s to make and eat simple finger foods together.
Sing and play favorite songs together, because the part of the brain that processes music is the last to be affected by Alzheimer’s.
Play together with toys – men generally enjoy playing with different latches or toy tools, while women enjoy baby dolls.
Tell them stories or make up stories together. If the person gets mixed up telling a story, it’s all right. Go with the flow and ask them questions about their story.
Children like to feel useful and do adult activities. When caregiving for a loved one who has Alzheimer’s is divided between children and a responsible adult, it’s the perfect opportunity to teach children age-appropriate tasks like folding laundry, feeding pets, tending the garden, washing the car, etc. Recruiting them for some tasks of daily living provides the responsible adult the opportunity to make a phone call, read the newspaper, and practice self-care like meditation, exercise, etc.
Situations when a responsible adult should intervene during the moderate stage include the following:
Explain to children that the person with Alzheimer’s repeats what they say or do because they’re trying to make sense of the world.
Encourage children to listen carefully to figure out what the person is trying to communicate.
Encourage children to keep the noise level down.
Help children understand sundowning by encouraging them to keep the door closed. when the person is sundowning, and to alert a responsible adult if they’re scared or having trouble keeping the person inside.
Explain that if the person leaves the house by themselves, they could get lost.
Tell children to come and get a responsible adult if the person goes outside.
Explain the purpose of the walker or other adaptive equipment and encourage children to remind the person to use these aides.
Explain the danger of climbing on a walker or other adaptive equipment.
Encourage children to not argue or be afraid, and to get a responsible adult if the person gets mad or scares them.
Encourage children to help whenever they can, for example, changing TV channels on the TV remote control.
Encourage children to help the person pick out clothes, but to get a responsible adult to help the person get dressed.
Encourage children to get a responsible adult to help with bathroom needs.
The person with severe stage Alzheimer’s is confined to a wheelchair, or they may be bedridden. They usually don’t recognize anyone, and all of their personal needs must be performed by a caregiver.
Here’s a list of activities children can do with a person in the severe stage of Alzheimer’s:
Sing their favorite songs and dance for their loved one.
Hold their hand or gently rub lotion on their hands and arms.
Tell them a story about their day.
Make a card to give to them, or to send to them in their care community.
Draw pictures for them and put them where they can see them in their room.
Help make a favorite food for them.
Make a memory book, or use one that was made for them in the mild or moderate stage, and talk to the loved one about the content within it.
Here are some specific situations when the child will need a responsible adult to intervene while they are with a person with severe Alzheimer’s disease:
When the child tells you about a physical change in the person, such as the person starting to breathe differently
When the child tells you the person may have wet or soiled their clothing
When the child tells you the person is becoming restless
When the child tells you the person is trying to get out of bed
When the person with Alzheimer’s needs to eat – A responsible adult should feed them because the person may have trouble swallowing.
Here is a summary of tips for interacting successfully with a person with Alzheimer’s in any stage of the disease:
Maintain a quiet, structured, familiar environment.
Encourage one child to interact at a time.
Avoid arguing with the person who has Alzheimer’s disease.
Keep materials available for familiar activities.
Make eye to eye contact often.
Give one direction at a time because a person with Alzheimer’s processes information very slowly.
Help the person know where they are so they will feel safe.
Use sensitivity training to help children understand what a person with Alzheimer’s or any type of dementia is experiencing.
In conclusion, approach any discussion with children about Alzheimer’s with sensitivity and openness, using terms they understand. As the responsible adult, be equipped to answer the child’s questions. When they ask the difficult ones, that’s when they’re ready to hear the honest answers. The last thing you want to do is to instill fear in children, reinforcing the stigma you’re trying to dismantle.
Last, but not least, from diagnosis through the severe stage, demonstrate to children how they can have fun, demonstrate love, and comfort a loved one who has Alzheimer’s disease or any type of dementia. The goal is for children, their families, and their loved ones who have Alzheimer’s or any type of dementia to continue having meaningful interactions over the course of the disease and to create positive memories.
ABOUT BRENDA FREED, MA:
Brenda Freed, MA, has a Master’s degree in Music Education/Music Therapy, with an emphasis in counseling. She and Alder Allensworth, MM, RN, co-created the Mackenzie Meets Alzheimer’s Awareness Program and the Mackenzie Meets Alzheimer’s Disease Picture Book. These initiatives help families have meaningful interactions and create positive memories from diagnosis through the severe stage of Alzheimer’s disease or any type of dementia. Freed pioneered the Music Therapy Program at the University of Iowa Hospitals and Clinics where she worked with patients of all ages and with different diagnoses, including Alzheimer’s disease. She has published music therapy articles, poetry, and arts and entertainment magazines. Freed teaches voice, piano, and guitar online, voice and harmony workshops at festivals and conferences, and has produced a line of Effortless Music Instruction Products. She created and hosts the Young Artist Performance Incubator (YAPI) program at the renowned Kerrville Folk Festival. Freed is also a performing singer-songwriter with several published albums of original material. She and her husband perform as Him & Her TX.
Contact information:
Website: www.MackenzieMeetsAlzheimers.com
@mackenziemeetsalzheimers on Instagram, Facebook, LinkedIn and YouTube
Email: mackenziemeetsalzheimers@gmail.com