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Talking with Your Kids About Alzheimer's Disease
Alzheimer’s disease impacts not only the person diagnosed, but spouses, caretakers, and the entire family unit.  While adults have often had experience dealing with diagnosis, disease, and illness, it can be an especially confusing, scary and challenging situation for children to navigate.  When caring for a loved one with Alzheimer’s disease and other forms of dementias, it is important to address the disease with children.  How children are affected can depend on several factors including their relationship to the person diagnosed, their age, and stage of diagnosis, among many other factors.  In this post, we offer some tips on how to talk to kids about Alzheimer’s disease:

Stay Age-Appropriate: Talk honestly and use age-appropriate explanations.  For young children, they are commonly not able to connect the dots between the biological disease and science behind it, with the behaviors and emotions they are seeing, so we recommend using easy-to-understand terms and explanations, for example, “Grandma or Grandpa has an illness that makes it hard for them to remember things.”  For pre-teens and teens who have the ability to comprehend more complex information, and may understand biology, you may be able to explain more about the disease, its progression, and the symptoms they will see because of the disease.

Discuss the symptoms and what to expect: Be open, honest, and gently concrete in your discussion with your children.  Alzheimer’s disease is complex for may reasons, but especially because of how symptoms and behaviors manifest.  This can be very confusing for children, so speaking to them in concrete terms of what they might see and discussing examples may be helpful. One way could be to compare the disease to something they can relate to such as explaining that similar to the way that pain is a symptom of a broken arm, but the visible and physical injury of the broken bone is the diagnosis, so, the behavior their loved one is demonstrating is a symptom and is the result of the disease. 

Reassure: Provide reassurance to your kids that their parents are fine and not going anywhere.  Sometimes young children may be concerned that this is contagious or have other fears related to the illness, so continuing to provide the reassurance and answering questions and addressing fears is important.

Common Responses Among Children. How children respond to the news of a parent’s or grandparent’s Alzheimer’s diagnosis varies by age. Following are typical responses for each age group, recently shared on an article from alzinfo.org:
 
Young Children
  • Have complex feelings about their relationship with the patient
  • May not verbalize feelings
  • May not be thinking what we assume
  • Can feel sad, angry, guilty and depressed
  • Can feel left out of the patient’s care plan
  • Can feel overwhelmed by excessive fear of loss and abandonment
  • May act out their fear with a regression to an earlier stage of development
  • May develop separation anxieties, such as school phobia
  • May develop social interaction difficulties with peers and/or teachers
  • May develop physical problems
Teenagers
  • Will have mixed feelings of grief and resentment
  • May be reluctant to bring friends home
  • May feel hurt that the patient fails to recognize them
  • May feel embarrassed by the patient’s odd behavior
  • May withdraw from the family more than is expected
  • May experience difficulties in school
  • May act out in self-destructive ways, such as substance abuse, careless driving or eating disorders
  • May “tune out” and act uncaring
  • May become excessively moody
  • May feel overly responsible for patient care and/or helpless
Parents
  • Can help their children cope
  • Can explain clearly and concisely about Alzheimer’s disease
  • Can feel comfortable sharing their feelings with their children
  • Can include children in the patient’s care plan
  • Can arrange for respite for the entire family to enjoy activities together
  • Can be creative in including the patient in their family life
  • Can alert teachers and parents of the children’s friends about the disease
  • Can expect their children to need extra attention
  • Can expect their children to be children, not pseudo-adults
  • Can give extra praise, hugs, kisses and love wherever possible
 
Keep Talking: Alzheimer’s disease manifests differently in each individual person, and as the disease progresses, so too do the changes in behaviors and abilities of your loved one.  Be sure to keep the conversation open and continue to help your children cope through each phase.

Happier at Home has caregivers who specialize in Alzheimer’s and dementia care and can provide some much-needed respite services to give the entire family a break and some time to have a little rest or fun.  We have many partnerships and relationships within our community and can act as a resource to you and your family if you or a loved one you know has recently been diagnosed.
 



Some information for this blog was found on alz.org and alzinfo.org
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