Talking with Children About Alzheimer’s & Dementia

Due to the life expectancy of dementia diagnosed individuals, a child can witness a grandparent or other family member’s health deteriorate as they grow through childhood. The most recent data released by the Alzheimer’s Association reflects, “People aged 65 and older survive an average of four to eight years after a diagnosis of Alzheimer’s dementia, yet some live as long as 20 years with Alzheimer’s. This reflects the slow, uncertain progression of the disease.”

Some children may notice something changes about their loved one and ask questions. Others may remain quiet about their observations. Depending upon the family dynamic and a child’s temperament, one can feel a range of emotions, from sadness, to anger, to fear. So, it is important to validate and allow youth to express these feelings.

Some factors that may affect children include: 

• their relationship to the person with dementia (i.e. a parent, grandparent, relative, friend)
• how close your child is to the person
• where the diagnosed person lives (i.e. in the same home, long-term care facility, another state)
• age of the child

It is essential for everyone surrounding the child to be aware, responsive, and transparent in helping them understand and deal with their feelings about their loved one’s illness.

Start with the basics

To assist you in talking with your child about Alzheimer’s and dementia, our licensed social workers suggest referring to the helpful FAQ page on our website. As the adult, it’s important to understand the disease first and communicate basic questions and answers, such as…

What is Alzheimer’s disease?

Alzheimer’s disease is one condition that causes dementia. Alzheimer’s disease is a physical disease process characterized by plaques and tangles in the affected person’s brain. The decline in short-term memory is commonly an early symptom, with loss of other mental abilities, such as judgment, decision-making ability, self-control, insight, and language skills increasing over time. Current treatments may delay the progression of symptoms but do not stop or reverse the underlying disease process.

What is dementia?

Dementia is a syndrome (set of symptoms) characterized by a gradual decline in mental abilities, such as memory, personality, behavior, and thought. Dementia symptoms can be caused by different diseases, including Alzheimer’s disease, Parkinson’s disease, and Vascular Dementia. When a person exhibits signs of dementia, further medical evaluation is warranted to distinguish what type of dementia they may be experiencing and rule out potentially treatable/reversible causes of cognitive declines, such as vitamin deficiency, thyroid imbalance, or depression.

Discussing Dementia with Children of All Ages

When talking to any child about Alzheimer’s or dementia, it is important to remain honest and transparent with them about the situation. For children who have some understanding of disease, communicate to them that Alzheimer’s and related dementias are not contagious, and that the memory loss and related symptoms and behaviors are not the fault of the child. Explain the benefits of socialization and spending time with their loved one (sometimes under the supervision of an adult if necessary). Additionally, when approaching the topic of dementia, it is important to take into consideration the age of child.

Ages two and under: The most important thing is emphasizing comfort and reassurance. Make sure your child understands that their loved one is sick and use age-appropriate language such as saying, “Grandpa is sick and has a boo-boo, but he still loves you.”

From ages two to six: Children at this age are starting to ask more questions and it is important to address these candidly and if you do not know the answer to a specific question, be honest and tell them. Encouraging your child to express their emotions and feelings through activities and play. Simple books about the topic are also appropriate for this age.

Ages six to twelve: Children at this age are beginning to understand the disease and how it affects the body. They may even be ready to learn about how dementia was diagnosed, and how it is affecting the brain. At this age it can be helpful to have the child get involved in an activity that they can do with their loved one such as looking at family photos, coloring, painting or a jigsaw puzzle. As the adult, express your own emotions and encourage your child to express them through activities.Ages thirteen to eighteen: At this age, it is possible that your child may have already seen another loved one become ill or pass away, so it is essential to encourage open communication to assure your child feels comfortable interacting with their loved one. As the adult, stay attuned to behavioral changes, schoolwork, and social life of your child as these things may shift with their mood, depending on how close they are to the diagnosed individual. At this age, you can suggest a shared activity, such as looking at pictures, coloring, going for walks, or listening to music together.

Alzheimer’s & Dementia Resources for Parents & Children

The LIAD Center’s licensed social workers offer supportive services that can help you and your family navigate through your journey with dementia. Our center offers in-person and virtual support groups, as well as one-on-one counseling for adults. Our counseling service accepts an array of insurance plans, including Medicare, United Healthcare, Cigna, Oxford and more. Through our hands-on supportive services, adults can receive the care and education they need to best support themselves and their children.

Additionally interactive books and websites, such as the ones listed below, are an age-appropriate way to learn about the disease and learn to navigate their feelings.

Alz.org:
Parent’s Guide: Helping Children and Teens Understand Alzheimer’s Disease https://www.alz.org/help-support/resources/kids-teens

National Institute on Aging:
Helping Children Understand Alzheimer’s Disease

Mayo Clinic:
Alzheimer’s: Helping children understand the disease

ReadBrightly.com:
Books and Tips to Help Children Understand Alzheimer’s and Dementia

Contact the Long Island Alzheimer’s Dementia Center  

If you have a loved one living with dementia or Wernicke-Korsakoff Syndrome, the team at the Long Island Alzheimer’s and Dementia Center offers an array of support services. 

Contact us today to learn more about how we can help by calling (516) 767-6856 or visiting our website at www.lidementia.org.

Article Sources

https://www.alz.org/alzheimers-dementia/facts-figures

https://www.lidementia.org/alzheimers-disease/faqs/

https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers/art-20043890