Guidelines for Ellie Sessions
A guide to reading my book
The Forgetful Elephant
Raising young children’s awareness of dementia
Questions asked by Elyse, the young granddaughter of a gentleman with dementia who I used to care for, motivated me to write my book “The Forgetful Elephant”. I looked around for a book to give her clear, honest, respectful and sensitive answers in a child-friendly way, but could not find one, so I wrote this story in response to Elyse’s questions.
I hope as many people as possible in the community will tell this story to as many young children as possible, at home, in school, or in children’s activities. The aim is to raise children’s awareness of dementia, to explain dementia to them in a child-friendly way, to give them the opportunity to ask questions about memory loss, and to suggest activities to maintain a meaningful relationship with a loved one who has memory loss.
To raise children’s awareness of dementia, and to encourage their engagement in the story, I offer Ellie Sessions. These are interactive storytelling sessions based on my book and its characters. They provide an opportunity for a question-and-answer session about living and coping with dementia, and will hopefully reduce the stigma and fear associated with it. If you would be interested in booking an Ellie Session, please visit my website www.irenemackay.com for further details.
Guidelines for Telling the Story One-on-One
- Some people find it very difficult to talk to children about dementia. They may be confused and stressed, and feel that they want to protect their child from discussion of this difficult subject. However, children quite often feel and understand more than we realise. They may be frightened and distressed as a result of the tension in the family, which can affect their behaviour.
- Use “The Forgetful Elephant” book to explain dementia, and as a basis to talk about any questions and worries a child may have.
- Choose somewhere relaxed and comfortable to sit and tell the story if possible, where you won’t be interrupted for at least 15-20 minutes.
- If appropriate, cuddle the child comfortingly, tell the story, answer any questions which arise, and do some of the activities together.
- The activities suggested in “The Forgetful Elephant” are suitable for children of all ages to do with a loved one with dementia. More resources are suggested on my website www.irenemackay.com
- To give you more confidence to talk to the child, before you sit down to tell them the story, look through my website and social media links, read through the story and guidelines below, and the questions and answers. This will help you prepare replies if the child asks questions while you are reading.
Guidelines for Telling the Story to Groups of Children
These guidelines are based on my experience at Ellie Sessions. You are welcome to share any further tips you may have with our community: what has worked well for you, feedback, questions and answers.
- I find that it is best to separate the younger children from the older ones since they have a shorter attention span, and may not always have a relative or know someone with dementia. There is more chance that the older children will, and they will usually ask more questions during the question-and-answer session at the end of the story.
- The teachers or group leaders organise where the children will sit before I start my session. I prefer to sit at a level where I am not towering over the children. I have a table set up next to me with my hand-puppets, memory box and enlarged pages from the book, which I use as I read the story.
Telling the Story
- I start by introducing myself, and explain the reason for my visit. To engage them immediately I ask the children if they can guess what the story is about. I tell them that it is about a little elephant called Ellie who is going to visit her grandparents, and she is a bit upset because the last time she went to visit them her grandpa couldn’t remember her name. I explain that the reason for this is that her grandpa has dementia, and ask at this point if anyone has ever heard of dementia or Alzheimer’s, or if they have a relative or know anyone with dementia. Occasionally the younger children will respond positively to this. Older children are more likely to be dementia-aware, and sometimes have a relative with dementia. I explain that it is a condition which older people sometimes get, especially the elderly, and the most common symptom is forgetting things.
- I reassure them that we can all forget things and that it is OK to do so, but when someone has dementia it means that they forget things all the time, and they repeat themselves a lot. The reason for this is that their memory doesn’t work properly any more. I ask them if they can tell me what a memory is. Both younger and older children can usually answer this question. I explain briefly what memory is.
- I now ask for 3 volunteers to come and sit next to me to wear the hand-puppets as I read the story. Before commencing the story I ask if they are good listeners, and explain to them that after reading it I will be testing their memories by asking questions about it.
- I read the story, using the enlarged pages of the book to correspond with each page I am reading.
- The children with the hand-puppets are encouraged to act out the story with the puppets as they hear it.
- After reading the story I ask the children if they enjoyed it, and if they are now ready to have their memories tested and answer some of my questions about it, as follows:
- What was the weather like outside?
- Where was Ellie going today?
- What colour of dress did she choose to wear?
- What colour of shoes did she choose to wear?
- What happened to Ellie when she fell off her bicycle in the garden?
- What did Ellie take with her to help her grandpa to remember her?
- What did Ellie have for breakfast?
- What did Ellie put on the pancakes?
- Where else did Ellie manage to put the jam?
- Where did Ellie put her photo and poem before setting off to visit her grandparents?
It is amazing how even very young children can answer every question correctly, even though you might think they aren’t giving you their full attention.
- I congratulate them on what good memories they all have, and ask them to imagine what it would be like for them if I had read that story but they couldn’t remember a thing about it. That is what it can be like for someone who has dementia.
Before my question and answer session, I explain to them just how important it is to be patient if someone forgets things, because who knows, one day they may also be forgetful and they would surely want people to be patient with them, wouldn’t they? I then read the poem on the back cover of the book, and emphasise again the importance of being patient and not getting angry with someone who is forgetful.
Question and Answer Session
At this stage I ask if anyone has any questions either about the book or about dementia. The younger children tend not to ask many questions, however, the older children ask about both. Some common questions include:
- Q: Why did I write the story?
A: To explain dementia to young children.
- Q: Why did I choose elephants?
A: Because elephants are associated with long memories.
- Q: Is this the first book I have written?
A: Yes, although I’ve always enjoyed writing poems for my friends.
- Q: Who did the illustrations?
A: A very gifted Italian artist called Barbara Dessi, who has a small child just like them.
- Q: Will I be writing any more books?
A: Yes, I have ideas for a few more.
- Q: Is dementia contagious?
A: No, not at all.
- Q: Is dementia hereditary?
A: Some rare cases may be hereditary, but much more research is needed to know for sure. Most are not.
- Q: Can you get dementia from eating certain foods?
A: No, but research shows that certain ingredients in some foods may increase the risk of dementia.
- Q: Can eating certain foods stop you from getting dementia?
A: No, but it is always good to eat a healthy diet.
- Q: Do you forget how to swallow?
A: No, but in the later stages it may be difficult to chew or swallow.
- Q: Do you forget how to blink?
A: No, blinking is a reflex controlled by the muscles in our eyes.
- Q: Do you forget how to eat?
A: No, but may need assistance to eat in the later stages.
- Q: Do you die because of it?
A: You are more likely to die from complications of dementia such as infections and fractures, than from dementia itself.
- Q: If you get dementia will it ever go away?
A: Not as far as we know at the moment, but if diagnosed early there are medicines and ways which may slow it down.
10. Q: Are there any tablets that will help?
A: Yes there are tablets which help the symptoms that affect thinking, memory and behaviour.
I thank the children for inviting me along to read my book to them, and thank them again for being such good listeners. I encourage them to talk about the story and what they have learned from it with as many people as they can and nominate them all now as Ellie Memory Helpers, helping to raise awareness of dementia.
To help cope with living with dementia, everyone is welcome to join my support community and subscribe to my free Elliegrams Newsletter.
I am available for bookings for Ellie Sessions, talks and workshops where I will be able to answer more questions and discuss in more detail how to raise children’s awareness of dementia. Further details can be found here on this website.
I welcome everyone to join my social media community, where you can find further support:
Illustrations by Barbara Dessi firstname.lastname@example.org
Copyright © Irene Mackay 2014
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher and copyright owner.
These Guidelines are available as a printed booklet on request from info (at) irenemackay.com when a copy of my book is purchased