Including Children in the Alzheimer’s Conversation (click title to read)

We spent 2024 sharing 12 reasons to educate children about Alzheimer’s disease. This year we will go a bit deeper and give you more tips, information, and activities on how to put each of these reasons into action. 

 In the Mackenzie Meets Alzheimer's Disease Story Song Mackenzie’s parents explain Alzheimer’s disease to Mackenzie and tell her about some behavior changes she may notice in her Gran.

 Delving deeper into observable changes in a loved one who has Alzheimer’s and encouraging children to talk about what they notice is essential to keeping communication channels open. 

Story:

Alder was reading some of the posts on an Alzheimer’s support group on Facebook. One of the issues of concern was about inappropriate sexual behavior. A sandwich generation caregiver said her young child wanted to sleep in her grandfather’s bed. Her grandfather has dementia. There were numerous replies against this idea. 

Information:

A person with Alzheimer’s can have unpredictable behavior. The part of the brain that controls behavior can be damaged by Alzheimer’s. This prevents the person from being able to learn or relearn controls on their behavior, and can cause them to act impulsively. 

However, a child can learn the difference between acceptable and unacceptable behaviors. When a child observes or experiences an inappropriate or disturbing behavior, teach the child to seek out a responsible adult.

It’s important to teach children how to keep themselves safe. These lessons will serve them throughout their lives. Explaining to a child that the disease is responsible for the behavior, not their loved one, can cause a bit of confusion at first. 

 So how do you talk to your child about Alzheimer’s disease?

 There are many ways to do this at an age-appropriate level. One way we recommend is for you and your family to watch our What is Alzheimer's Disease?

 In the video, we explain what happens to the nerve cells in the brain of a person who has Alzheimer's. Watch the video here: “What is Alzheimer’s Disease?” 

 Explain to the child that Alzheimer’s disease causes plaques and tangles to develop in the brain, making it hard for a person with the disease to control their behavior. These plaques and tangles also prevent the person from understanding what is happening, which is terrifying for the person who has Alzheimer’s. 

 Some of these behaviors can manifest as terrifying or delightful.

 Some of the terrifying behaviors include:

1. Quick to anger and frustration
2. Sundowning
3. Overt sexual behavior

 Some of the delightful behaviors include:

1. Playfulness
2. Funny stories
3. Appropriate affectionate behavior

 Below are some tips on ways to mitigate the terrifying and encourage the delightful behaviors.

 Tips:

 Don’t:

1. Have a lot of noise and confusion in the home, like the TV blaring, people talking loudly over it, music blaring, etc.
2. Overwhelm your loved one with conversation or questions
3. Don’t expect your loved one to be able to do the things they used to do
4. Let the house or room be dark and gloomy
5. Don’t try to teach your loved one something new
6. Don’t expect your loved one to remember how to do something
7. Don’t correct your loved one if they tell a story different from how you remember it

 Do:

1. Maintain a calm, quiet, loving  atmosphere - leave the outside voices and outside activity outside
2. Ask one question or present one idea at a time and give your loved one time to process it and respond. 
3. Just smile and move on If their response to above doesn’t make sense
4. Play very familiar games or do familiar activities
5. Dance or sing to your loved one's favorite songs from their childhood
6. Remember for them when they can’t remember something.
7. Keep your inside space well-lit
8. Listen to verbal and observe non-verbal communication to determine what your loved one needs

 Activities:

1. Familiar activities are the best; your loved one can’t learn a new game.
2. Play can involve toys; many women with Alzheimer’s or dementia like to play with dolls, and men like to do things that remind them of fixing things, like messing with different kinds of latches.
3. Make a memory book
4. Encourage storytelling
5. Make easy snacks together

Actions:

1. Watch the What is Alzheimer’s Disease? video with your child or children and discuss what happens in the brain.
2. Describe scenarios in which the children should come to you for help.
3. Provide fun activities for the child and your loved one to do together.
4. Teach your children to assist you in keeping the areas of interaction clean, uncluttered, and full of light.
5. Don’t take terrifying behaviors your loved one presents personally. Understand it’s the disease causing these behaviors, and consult with a health care professional for assistance in managing these behaviors.
6. Please make a comment on how your child benefits from learning about Alzheimer’s below.

There’s an old saying by Joseph Smith, Jr.:  Knowledge does away with darkness, suspense, and doubt; for these cannot exist where knowledge is….In knowledge, there is power.

 Children are hard-wired to pay attention to their environment. It is a survival mechanism. They know something is different in their loved ones. Understanding Alzheimer’s takes them out of the dark into the light.

Share how you include your children in the Alzheimer's conversation in the comments section below.