Communicating a Loved One’s Health and Dementia Behaviors to Children
By Kerstin Yoder | 09/15/2021
Finding out that a family member has dementia and providing care for them can be full of both challenges and meaningful moments. It also impacts the whole family. When we add children into the mix, certain situations can get even more difficult to handle. Many of us may be struggling with how to communicate a loved one’s health or dementia-related behaviors to young children, such as a loved one’s grandchildren, especially regarding what to say and how to say it. However, having these important discussions can also be a positive shifting point in our relationships with them.
Why communicating with children about dementia is important
As adults, we will typically have our own wide range of emotions connected to a loved one’s dementia or change in behaviors, and we may be preoccupied with managing both their care and our fears for their wellness. This is heightened by the need to understand and navigate medical treatments, as well as balance work and daily responsibilities. With so much focus on the loved one needing care, the thought of explaining a serious illness to children might seem overwhelming, especially if we think they will not be able to understand what is happening.
The reality is that regardless of how we may try to keep information private and family activities routine, children overhear conversations. Sometimes they may even feel the sadness or changes in us and know that something is wrong.
Their lack of knowledge and/or understanding may fill their lives with uncertainty and increased fear. The good news is that there are ways to gently communicate to children about dementia. It is important to remember though that the amount of information a child can handle depends on their age, as a child’s understanding changes as they get older.
Beginning the conversation
Every family needs to judge for themselves what their child can understand. Physicians, social workers, clergy and therapists can share resources and guide us through the conversations. Here are a few general tips:
1. Plan for the Conversation: When and where should it occur? Who will be present?
2. Start the Conversation: With a young child, it is best to keep the explanation simple. We should give children information, but also give them time to process it. We can observe the child's reaction and respond honestly, in simple language. If optimism is appropriate, we can be reassuring.
Once the conversation is started, here are a few other things we can do to support children:
1. Acknowledge feelings (anger, sadness, jealousy, worry, guilt, etc.), but also understand that young children cannot always label their feelings and may instead express them through their actions. For example, the child may be more whiny or clingy than usual. We should be accepting of these kinds of changes, but look for ways to channel them healthily.
2. Find ways for our children to help if they wish to, such as by drawing pictures or looking at photo albums together with a loved one.
3. Keep routines as consistent as possible. We should prepare our children for anticipated changes in their days caused by our caregiving responsibilities, and when possible make them part of the process by giving choices.
4. Do not shy away from questions. Kids are naturally inquisitive. If children start to ask questions, we must try not to brush them off or switch the subject. So much of how to talk to children relies on being honest and vulnerable. If we do not know the answer to their question, it is okay to be honest and tell them as much. In fact, their questions can be a great start to a conversation. If you need additional help handling questions, the Alzheimer’s Association has a guide to helping children and teens understand dementia which can support you during these conversations. If they are an older child or teen, you can also show them this brief video from Dementia Friends about what they can do to help a loved one with dementia.
5. Suggest different ways to connect. It is normal for children to want to connect with their loved ones and us, especially is they know their loved one is sick or becoming forgetful or confused. Although the things they do together might change, the connection will stay. That is the most important part. However, it is important to never force the interaction. This can cause resentment or even fear.
6. Reinforce feelings of love. No matter how a loved one changes, their heart will always love those important to them. This fact is especially important to reinforce to kids that although their loved one may be acting differently from how they used to t, their love for them is remains unchanged.
7. Use books. Based on the age of the children, we can get books from our local library to help start a conversation or give a new point of view. This list of books for children compiled by the Alzheimer’s Association is a good place to start your search. With younger children, we might consider reading the book and then following up later with a coloring session or puppet show that the child leads. It is often in these moments of free play that concerns and questions find their way out.
It is not easy to tell children about a loved one’s changing health or behaviors, especially since those of us in this situation are likely in the middle of many different emotions ourselves. Being a parent, guardian or a grandparent raising kids is hard work, but with a little honesty and vulnerability, it is possible to find beauty in even this situation.
This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.