How Do I Explain Dementia to Our Children?

explaining dementia to children

How is My Dad’s Dementia Affecting Them?

Dementia can be hard to understand. As if it isn’t difficult enough to grasp the stark reality that our loved one is losing their mind, there are the added worries of how to explain to the children what’s happening to our loved one, and monitoring how “it” might be affecting the kids.

As adults we know all too well the devastation and challenges associated with dementia. Every day we experience the behaviors that can cause upheaval, aggravation and anguish; the behaviors that not only endanger our loved one, but others in their path. The behaviors that leave us confused, scared and angry. We get so wrapped up in our own concerns that we may not stop to consider how our children are being affected. Do they have concerns? Do they have questions? Are they scared? Angry? Frustrated? Do they feel guilty? The answer is a resounding YES! Just because they don’t verbalize, doesn’t mean they aren’t affected.

Of course we want to protect our children, but it is important for them to understand what is happening and for us, as parents, to recognize how the dementia is affecting their lives.

We need to help our children:

  • Understand they are not the cause of the problem
  • Understand the behaviors are a result of an illness
  • Understand the behaviors are not directed at them
  • Understand there are skills to help them cope with the behaviors
  • Understand they are an important member of the family and their feelings matter

We often underestimate our children’s ability to understand and accept certain situations, but it is important to speak with them about the illness and allow them to ask their questions. Tailor the discussions based on your child’s age and level of comprehension.

Remember, discussion is a two way street –listen to what your child is or isn’t saying and encourage questions.

  • Explain the illness in a clear, open-minded manner. Visual aids can be helpful.
  • Explain by example, use examples of behaviors that the child has witnessed to help them understand. For instance, “grandpa is wearing a winter coat on this summer day because his illness makes it difficult for him to distinguish seasons”.
  • Explain that while grandpa may not be able to communicate or participate as he used to, it still brings him much joy to spend time with the child.
  • Explain what your loved one is still able to do, for example, play the piano and sing favorite songs. Encourage children to participate in these activities.
  • Explain what tasks your loved one is having difficulty doing, for example, finding the bathroom. Encourage children to play an active role in helping, take grandpa by the hand and walk him to the bathroom.

It is important to encourage questions, and answer those questions honestly. Be patient and reassuring; accept that you may need to have this discussion more than once. It is just as important for you to ask questions. How does your child feel about the illness? What concerns does the child have? What frightens them most about the situation?

Having a loved one with dementia brings much change to the family dynamic. We spend more time caring for the loved one afflicted, we become more stressed and perhaps short-tempered, we are more tired and less available for our healthy family members. Children may internalize feelings of sadness, grief, anxiety, guilt and embarrassment. They may feel discussing their concerns will only make matters worse. It is crucial to be aware of our children’s non-verbal means of communication.

Watch for signs indicating their distress.

  • Acting out, needing more than usual attention, unexplained aches and pains
  • Difficulty sleeping, nightmares, lack of concentration
  • Avoiding the situation, isolating themselves
  • Mood swings, extreme sadness or happiness

These are clear indications that your child is having difficulty coping with the illness. Be proactive; don’t allow these behaviors to go unattended. Make time, uninterrupted time, to sit down and talk to your child. Reassure them that you understand their pain and that you are there to help them with their frustrations. Validate their feelings and encourage them to talk about their fears. If they’re struggling to find their voice, offer your own observations. “I get so frustrated when grandpa tells the same story over and over”. Allowing them to see that you too have frustrations helps to validate their feelings, and opens the door for conversation.

The Do’s and Don’ts

  • Do involve the child in daily routines, this will help them accept the situation as grandpa’s “new normal” and provide a level of security for the loved one with dementia.
  • Don’t leave the child unattended or “in charge”.
  • Do make sure the child understands what things might upset the loved one.
  • Don’t forget to reassure the child that the time spent with the loved one is important and meaningful.
  • Do ensure that the child balances time spent with the loved one with their everyday routines.
  • Don’t expect the child to spend too much time with the loved one or take on too much responsibility.
  • DO ENCOURAGE THE CHILD TO TALK ABOUT THEIR FEELINGS!

Open, honest communication can help foster a balanced, respectful relationship, and cultivate a true sense of involvement and meaning.

 

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About Wendy Pester

With over 20 years of experience in the healthcare industry, I was fortunate to find my niche in senior care and have flourished as a devoted senior advocate. As a Community Relations Liaison, I have gained considerable experience working with those struggling with dementia and other medical conditions. As a Client Care Manager, I facilitate a smooth transition for clients being discharged from a hospital or rehab setting, working closely with the client’s medical team, family members and support team to ensure a safe, seamless return home. 
I am a Certified Dementia Specialist and a volunteer with the Alzheimer’s Association, facilitating monthly Alzheimer’s Support Groups in South Jersey, and provide one-on-one training and support to families of those struggling with dementia.

2 thoughts on “How Do I Explain Dementia to Our Children?

  1. Paula Susan

    What an excellent article. You are raising consciousness to something so vitally important and not respected during most of our own growing up. children hear, feel and experience whatever is going on around them. I hear the adults say, “Oh they are doing fine. They are with their friends. They don’t talk about it. They are too young to understand what is going on.” Those are the invisible children who grow up with that monkey on their backs. They end up questioning what is real and don’t know how to identify their own feeling experiences. Your article is a service to parents!

    Thank you.

    Paula

    Reply
  2. Wendy E. Pester, CDS

    Paula, thank you for your kind words, support and input. To this day I recall the dark cloud that hung over the term Alzheimer’s. When I was a child I recall feeling frightened, and cloaked in darkness, alone with no one to talk to, no one to explain what was happening. I hope this article will strike a chord with families, and help diminish the stigma of dementia.

    Warmly,

    Wendy

    Reply

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