AlzAuthors: Irene Mackay, Raising Children's Awareness of Dementia

My name is Irene Mackay, author of “The Forgetful Elephant,” which explains the memory loss aspect of dementia to young children in a way they can understand.

When my Mum was diagnosed with Vascular Dementia in 2010, I had no idea what dementia was. I wish I had, as I would have handled and coped with her behaviour towards me so much better. Following her diagnosis, I wanted to learn more about dementia and help others who had this illness, so I went to work with Alzheimer Scotland as a Home Support Worker.

There, one particular gentleman whom I gave support to had a little grand-daughter who was always there during my visits. Elyse was 3 years old at the time, and couldn’t understand why her grandpa behaved the way he did or why he could no longer remember who she was. This got me thinking that there must be many children in the same situation as Elyse, so I did a bit of research to find out if anything was available to give some sort of explanation to young children. When I couldn’t find anything, I decided to do something about it, and wrote “The Forgetful Elephant.”

When a family member or someone close to us is diagnosed with dementia, it can be a very difficult time. More often than not, it is a grandparent who is affected by this illness; therefore there will be young children involved. It can be difficult enough for adults to understand the effects dementia has on someone, so we might think it would be easier not to try to explain this to a child as we want to protect them. The child may already be aware that Grandma/Grandpa is behaving differently, but they don’t want to mention it. They may even be frightened if the person with dementia gets angry and perhaps think it is their fault. I used to blame myself for the way my Mum behaved towards me, and my concern is that young children will do the same.

After self-publishing my book, I wanted to get out in to the community and speak to children about dementia and read the story to them, so I began to approach my local Primary Schools. I am delighted to say I have visited many schools, reading my book to children and offering a question and answer session which enables them to talk openly about dementia. The feedback I receive from teachers and parents after my visits is always positive. Very often the teachers who are present during my sessions are amazed by what the children already know about this illness, by the questions they ask, and how many children actually have a relative with dementia.

I have also had the privilege of visiting Northern Ireland where an organization called DEED (Derry Engaging and Empowering Dementia) are using my book as a tool to educate children in their community about dementia. The Ulster Girl Guides also adopted my book as a way for the girls to earn their badge by talking to The Brownies about dementia.

I am very proud of what I have achieved over the past four years. It hasn’t always been easy, as so many people still don’t think we should talk to children about dementia, and I have had many doors slammed in my face. On the other hand, I have received many emails and messages through Social Media telling me how my book has helped families, and congratulating me on the work I am doing, which makes it all worthwhile.

 My Mum sadly passed away in August, 2014. I am thankful her strength, passion and determination live on in me and help me to continue with my campaign to raise children’s awareness of dementia in her memory.

You can find out more about me, my campaign and my resources on my website. You can also follow me on Twitter.