Explaining Dementia to a Child - Jessica Shepherd, author of Grandma

Jessica Shepherd, Author and Illustrator of Grandma, shares how she might open a conversation about dementia with a child...

Originally posted on the Carewatch website Mon, April 11th, 2016

In writing this article I have been reflecting upon the importance of heart to heart communication in promoting positive mental health in children, and indeed people of any age. It isn’t a new proposal, most understand the logic that it feels better when we share our struggles, but sometimes taking that first step to opening our hearts and initiating dialogue is the biggest challenge of all.

We can particularly struggle when children are involved. As a society we feel a high level of responsibility to protect children from fear or sadness and as a result we often try to hide them away from painful changes, even those happening close to them. But protecting them too much could actually hinder their ability to overcome hardships in the future.
It is important to remember that the children we are raising are growing into adults. Life can be hard. It is our duty to help equip them with the skills, wisdom and courage to overcome even the most difficult aspects of life.

We don’t want them to hide away or feel defeated when they are inevitably faced with some kind of difficulty. We hope they will feel strong enough to battle through it, growing, learning and deepening their compassion for themselves and others as a result.

I am not a trained expert, but I would like to encourage every person to use vulnerability, through difficult times, to build deeper heart to heart connections with others, and to have the courage to stay committed to important conversations, even when they feel uncomfortable.

I have made a few suggestions, but please keep in mind that, although I do practice being a human being myself every single day, I’m not a psychologist or a therapist. It is important to always trust your own wisdom in what works and doesn’t work for you and to feel able to explore communication techniques freely and seek help from professionals if needed.

1. Take the first step
Find a gentle way to break the ice. If you are struggling with this there are an increasing number of great picture books out there, as well as videos and many other tools available to support you.

Allow the child to open up in their own time – for some this could happen quickly and others may take a little longer. That is ok. Don’t pile on pressure but don’t give up.

2. Go with the flow
Encourage the child to lead the conversation, where they seem keen to do so, and let it unfold naturally.

If the child is not ready to speak about their own feelings directly you could perhaps ask how they think another person in a similar position to them, such as Oscar in ‘Grandma’, might be feeling.

Try to relax; you are not responsible for fixing anything, you just need to be there with an open and loving heart. The hardest thing to cope with is feeling isolated and alone.

3. Be prepared for your child to ask anything at all!
In fact – encourage this. There are no silly questions.

When it comes to dialogue there is only so much strategic preparation you can do. Children’s minds can lead anywhere. They often see life from a very unique angle and shine light in nooks and crannies we hadn’t even considered. When it comes down to emotional difficulties, children often have a very valuable way of looking at the situation from a variety of beautiful and honest perspectives.

4. Nurture sincerity
Honesty and sincerity are immeasurably important when communicating with children about life, particularly the more difficult aspects. It is important to use our wisdom and compassion to help us decide what is necessary and appropriate to share with our children. We do not always need to hit them with every detail at once but children are wise and as the journey into life with dementia unfolds they will be aware of things that are changing. It is important to open discussion about anything they may be experiencing that is upsetting or confusing for them.

Don’t be afraid to share your own heart and your own honest feelings. Truly listen and don’t be afraid of hearing how they really feel. Treat their concerns as important but remember; you do not have to know how to fix them. Reassure them you are going through both the joyful times and the hard times together, they are not alone and you are grateful that they are there, with you too.

5. Take action
Work together. We often underestimate the value a child’s perspective can bring to an emotional situation; you might even find you feel supported and encouraged by their outlook.

Help the child to understand that they are a useful and valuable part of the life of the person living with dementia. Together, work out things that they might like to do to help out and, if and when they feel uncomfortable, gently reassure them without putting on any pressure.

Decide on fun activities you can do with your loved one with dementia, and innovative ways you might be able to help them or bring them moments of joy. Look at resources, including those at the end of this article, for help in doing this.

Spend some time sharing your favourite memories with the child and think of fun ways that you can keep them alive together, even if your loved-one is forgetting.

Encourage them to always hope for the best while being sincere and realistic. Activities won’t always go exactly to plan or have the outcome you desired. It is also important to remember that just because it wasn't a success one day doesn't mean it won’t be the next. Love and care is never wasted, you are never wasting your time, keep trying.

However your conversation begins or unfolds, prepare yourself by deeply understanding that if you don’t know, if you don’t have the answers, it’s ok. The important thing is sincerity; don’t brush off any concerns. You can use your child’s questions as a catalyst to learn together and to deepen your connection with the little person right in front of you.

Material for Young Children

Activity sheets from Grandma by Jessica. These can be used as creative activity which can be therapeutic, while encouraging discussion.

Jessica Shepherd – ‘Grandma’ 
Emilie Rivard/Anne-Claire Delisle - ‘Really and Truly’ 
Jo Johnson – ‘Grandpa Seashells’ 

Professional Support
Alzheimer's Research UK - Young Kids 
Alzheimer's Society 
NHS Dementia Carers Guide 
Dementia UK 

Other tools
Fantastic video (approx. 30 minutes) Directed and Produced by Eamon Harrington and John Watkin; based on the book "What's Happening to Grandpa?" by Maria Shriver

Books on Prescription List for Dementia
Reading Well, Books on Prescription 
Brilliant ideas for Creative Activities

Jessica Shepherd
Jessica Shepherd graduated from University College Falmouth with a Degree in Illustration. Now she writes and illustrates picture books, alongside a variety of other exciting and challenging adventures. She has an eclectic working background and varied experiences of working closely with people of all ages in caring roles as well as within the arts.

She has a special interest in helping people live happy lives, and wants her books to do the same. Over the past few years she has been exploring the importance of heart to heart communication as an essential foundation for happiness, with a focus on the role storytelling can play in this.

"Stories act as such a powerful tool to present ideas and encourage dialogue about parts of life that may be foreign and not easily understood. I wish to help people connect more deeply as they learn about life together."

She grew up with her brother and sister, and remembers collecting worms for mud pies, as well as making perfume from flower petals and vinegar!

Back to blog