Your children are your life’s masterpieces. When a parent or grandparent is diagnosed with dementia or Alzheimer’s, a child’s world can become unhinged and upsetting, especially if they don’t understand what is happening. This disease changes the lives of all family members, including youngsters and grandchildren.
Everything you share with love and sincerity will help your children and grandchildren cope and become kind and compassionate people.
I was director of a social service agency in Michigan from 1985 to 1994. I developed a four-week support program for children and their parents who were going through divorce. Children often blame themselves for the divorce. My purpose in designing this program was to help parents talk to their youngsters, to give them basic age-appropriate information about what was happening. This program became a model for the local divorce court judges to refer families when couples filed for divorce. I’d like to share a few of these program’s principles, and apply them to informing your child and teen about Alzheimer’s disease.
Children are resilient, understanding, and caring if they have an explanation about the disease to the degree that they can understand. You may think you can hide stress and anxiety from them. You can’t! Youngsters are smart and intuitive. Not sharing information can magnify their fears and self-blame. Be straightforward and keep it simple. Young children don’t need all the technical details of the disease and how it impacts the brain.
Tell them that Alzheimer’s is an illness that causes important nerve cells in the brain to die. This disease will affect the person’s ability to remember things and think clearly. The disease is not contagious, so they don’t need to be afraid they will “catch” it. As the disease progresses, they may notice some changes in behavior, like the person’s inability to concentrate and communicate, or remain patient. Unfortunately, there is no cure yet, but let children know that researchers are working diligently to find one.
Instill the idea that the disease is not the person. If their parent, or grandpa or grandma becomes angry and frustrated, it doesn’t mean they don’t love the child. It’s the illness that is causing this behavior. Encourage the child to be patient. Their grandparent or parent can still feel joy, sadness, and love, and can still give love. The child just needs to love them in return, and enjoy them as they are now, and in the future.
Teens can take in more information about the disease, and how the areas of brain function or not over time. They can understand that, as Alzheimer’s progresses, the brain no longer has the ability to make or store new memories. It might be helpful to relate the disease to computer terms. As far as the brain is concerned, a well-functioning one stores an experience like a computer on automatic “save.” When a brain is affected by Alzheimer’s, that new experience is not always saved as a memory. Persons with Alzheimer’s often live and function within memories from the past.
Let youngsters talk openly about their fears and feelings. Make sure to answer honestly any question your child or teen may have. If you don’t know the answer, tell them that.
Encourage your children and teens to maintain an active relationship with their loved one diagnosed with the disease. If you live far away, perhaps you can organize and set up times for them to Skype regularly. Telephone contacts may also be an option, especially when the loved one is in the early stages of the disease and feels comfortable speaking on a phone.
If you will be taking your children to visit a loved one in a care facility for the first time, prepare them with what they might see. People in wheelchairs or connected to oxygen tanks may look scary to young children.
In advance of the visit, help youngsters create a family album to take with them to share with their relative. Bring an easy fun activity that your children can do together with their loved one. Have the kids make a memory jar where they list things they remember about their parent or grandparent on slips of paper, decorate the slips, fold them, and add them to the jar. Then during visits, children can draw a few slips and discuss them. Singing familiar songs might also be an enjoyable activity. I’m sure your kids will come up with ideas of their own to maintain interaction.
An excellent resource that will help you have a conversation with your children can be found at: http://preview.alz.org/national/documents/brochure_childrenteens.pdf. I’ve put together a list of books and videos specifically for children and teens on my website in the “Resource” section. Check out your local library to see which of these books you can borrow. Watch the videos together and ask if they have any questions or want to discuss what they just saw.
Your openness and willingness to discuss your youngster’s feelings and fears, provide reassurance, and answer their questions will keep your family strong in dealing with this disease.
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Five-year-old Sophie Flynn is from Ireland. She visited her great-grandmother for the first time recently, and was not intimidated by her great grandma’s dementia. Sophie warmed up to her immediately and sang her this sweet song: https://youtu.be/oR0gX3Pk04c .
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To access additional resources for communicating with teens and children about the disease, check out these pages on my website: http://caregiverfamilies.com/books/, and http://caregiverfamilies.com/websites-and-blogs/.