Exeter dementia campaigner’s book features in national collection

Exeter dementia campaigner’s book features in national collection

Dementia campaigner and author Gina Awad has been selected as one of just twenty UK authors to appear in a new, specialist literary collection.

Gina, the leading light behind Exeter Dementia Action Alliance, published her first book called United in 2022 with the popular and much loved cartoonist, the late Tony Husband.

It not only tackled the serious issue of dementia and its impact on families in a humorous and approachable way but also helped people to navigate their way through what is often a journey fraught with complications.

And United has now been included in a book collection called Reading Well for dementia which was launched at the House of Commons and provides an up-to-date resource that reflects national clinical guidelines, best practice, advice and support.

It comprises 20 titles in England and 21 in Wales, which have been carefully selected and endorsed by health experts, charities and people affected by dementia.

The Reading Well organisation helps people understand and manage their health and wellbeing using helpful reading.

All books are recommended by health experts, as well as people with lived experience of the conditions and topics covered and their relatives and carers.

Gina said: “I was overjoyed to hear I was selected as a featured author in this fabulous scheme particularly knowing all titles have been reviewed by people directly affected by dementia, as well as professionals.”

The book collection launches, in partnership with public libraries, during Dementia Action Week (13-19 May 2024).

Available to borrow for free from public libraries in England and Wales, the scheme aims to improve lives through the power of reading.

Understanding and knowledge of dementia via high-quality, book-based information and advice can play an important role in supporting people affected by dementia, particularly in the context where one in two will be affected by dementia in their lifetime[1].

Karen Napier, CEO of The Reading Agency said: “The launch, during Dementia Action Week, of our new book collection, is a significant new development of The Reading Agency’s health and wellbeing offer.

“Written specifically for those living with dementia, their carers and loved ones of all ages, we believe that this unique, new, quality-assured book-based resource available from public libraries could play an important role in supporting the wider community affected by dementia.”

Isobel Hunter MBE, CEO of Libraries Connected added: “As libraries continue to increase their important role supporting dementia in communities, Reading Well for dementia is one of the many initiatives of the Public Library Universal Health and 

“Wellbeing Offer, a national strategy that promotes the role that libraries can play in promoting the health and wellbeing of local communities. Libraries provide access to books and also contribute positively to inclusivity, supporting wellbeing and strengthening community cohesion.”

Co-production partner Innovations in Dementia Community Interest Company has ensured the views of people affected by dementia informed all aspects of developing this book collection.

Keith Oliver, from the Innovations in Dementia, said: “Reading other people’s lived experience, both as a family carer and as a person with dementia, does help you to know that you’re not alone.

“There’s also the reassurance that everyone’s experience is different. So, you learn about similarities from these books, but also you draw some strength from the fact that you’re different.”

Gina visited Exeter, Exmouth and Sidmouth libraries to chat with them about her book and the importance of this compelling collection.

The full Reading Well for dementia list is available now at libraries across England and Wales, with titles also accessible as e-books and audiobooks. For more information, visit www.readingagency.org.uk.

Marc Astley Trustee of Westbank Community Health has known Gina since she began on her dementia mission in 2014 with her early vision.

He said: “While it’s a feather in the cap for Gina to be featured in this book it represents much more than that.

“This is recognition that she has become one of the country’s foremost campaigners, and champions for everyone who is, or has been, affected by dementia.”

About Gina

My name is Gina Awad. I founded and lead the Exeter Dementia Action Alliance. I am also a personal assistant and advocate for families affected by dementia.

I have a community radio show called  ‘Living Better With Dementia’ on Phonic FM

I was overjoyed to hear I was selected as a featured author in this fabulous scheme as I got to hear about it with the first published edition in 2015 and believed it to be a great resource for sharing such a compilation from one space. Particularly knowing all titles have been reviewed by people directly affected by Dementia as well as professionals. The lived experiences are the experts.

The inspiration behind Gina’s book

Tony and I worked together a lot (lock down caused us to focus our minds on how we could collaborate to make a difference).

Knowing many services were limited or withdrawn, inspired me to reach out to family carers and enable them to tell their stories.

The personal experiences that influenced the themes and content of the book

I had worked a lot with people with dementia. During Covid there were more challenges for people living with dementia and their carers. We thought we could help bridge the gap created by the pandemic (in that people had less access to support in the wider community) by reaching out to carers and families, enabling them to share their stories and experiences.

Themes such as Young Onset Dementia (YOD), cultural differences, planning ahead and addressing important conversations for the person as they were nearing the end of their life were significant themes.

Sienna’s story is a composite story based on my personal experiences in the community that didn’t appear within the other stories but I felt offered important additional features.

Feedback from readers who found the book helpful

We have publicly available reviews from people who found United helpful and supportive. For instance, one family carer said… “I love the way each family story explores the different obstacles that carers can experience from dementia diagnosis to living with it” … Showing that we take them on the journey.

Messages Gina hopes readers will take away from the book

Compassion, understanding, respect and patience are vital.

It’s possible to live well with dementia. The diagnosis is not the end, there are plenty of opportunities to discover new aspects of yourself and your relationships with others.