A multitude of challenges present along the journey through the stages of Alzheimer’s disease or a related dementia for the person diagnosed as well as for family members. For those navigating this journey alongside children preparation is key in anticipating and meeting their needs. While no two children are alike, similar challenges and opportunities often surface.
When is the Right Time?
One such challenge involves the question of when to tell a child about a loved one’s diagnosis. The set of factors involved in this decision will vary as each situation is unique. Generally speaking, informing a child sooner than later or as soon as changes are noticeable acknowledges their innate intuitiveness. It also supports their participation with a loved one in age appropriate activities and helps them to not feel left out. Consider the age of the child, their unique personality, needs, strengths and coping skills when informing of the diagnosis. Offer information in a simple, direct manner. Pause to allow time for questions and to determine if enough has been shared or if more information is needed.
Blaming Themselves
Another challenge is the likelihood for children to believe they somehow caused or are to blame for the changes occurring for their loved one and within the family system. Educating children about the disease process and characteristics, in age appropriate ways, will help direct the blame onto the disease itself. Offering reassurance that changes in personality and behavior are not the fault of the child are helpful throughout the disease course.
Deepening Connections
Opportunities come in the form of helping children maintain and deepen connections with their loved one despite a cascade of changes and losses. The natural curiosity and in the moment, mindful approach children bring to relationships and learning offers parents a key. This key unlocks the many creative and playful ways children can interact with a beloved grandparent or other relative whose short term memory and attention span are fading. Music, art, reminisce, movement, hand holding, and hugs are the building blocks to fostering meaningful connection.
Sharing Feelings Openly
Opportunities exist throughout the disease course to help a child express a range of feelings, such as sadness, anger and joy. Creating an environment that promotes emotional safety will help in this regard. Having access to age-appropriate books is a way to achieve this goal as books open the door to difficult conversations. Sharing feelings openly and honestly with your child also helps to normalize the experience within the family system. Click here for a few book recommendations for children.
A Guide
The following Mnemonic device is offered as a guide to summarize key points in this discussion. It will remind parents and anyone whose path crosses with a child how to start conversations, support emotional well being, and promote meaningful moments.
U R READY
U: Understand the progression of the illness to better answer your child’s questions in age appropriate ways
R: Reassure children they are not the cause of personality and behavioral changes
R: Reminisce as a path to connection
E: Enlist the help of your child in age appropriate ways
A: Acknowledge your child’s feelings
D: Dance, sing, craft, cuddle
Y: Y’s are always part of the Alzheimer’s journey
A journey with a loved one through the stages of Alzheimer’s disease or a related dementia is difficult and challenging and offers moments of joy and connection. Preparing for and walking this road with a child adds another dimension. Consider ways to take the journey together with your child by asking questions of your own, seeking answers, expressing feelings and finding safe spaces to grieve losses. Celebrate moments of unexpected joy and connection. Consider this experience as an invitation to be okay with not having all the answers as “Y’s” are always part of the Alzheimer’s journey.
Click Here to see ElderHealth featured on KGun9’s segment on Memory.
