By Gina Awad (Exeter, UK)
Over a decade ago I began a health and social care degree with The Open University which inspired an immense interest in dementia, the complexities for the person diagnosed, their family and support system. I have witnessed heartache, pain and calls for support through my personal and professional experience. I wanted to help and make a difference. I gleaned the lack of joined up services, the myriad of resources that appeared not only to overwhelm but also create a barrier to those affected, leaving them feeling unable to know where to begin.
My intense drive raised questions from my local community asking me where my passion was coming from, all assuming I had a family member with dementia. This was not the case and surprised people. On deeper reflection I recalled my early childhood experiences visiting care homes with my grandmother who partook in creative arts with the residents. As an 8 year old and over 4 decades earlier I remembered not the residents engaging with the arts but those that weren’t. Being a little girl my emotions were stirred and I felt a sense of isolation, fear and vulnerability coming from the residents who I now know were living with advanced dementia. I believe these strong emotions and my naturally empathic nature connected all those years ago with the people, and my study ignited them. This was the catalyst in my mission and sits at the heart of what I do and why I do it.
People living with dementia need understanding, love and support as do their families.
The idea of creating a book that would be accessible, jargon free and cover true family caregiver stories felt extremely important to me. I met Tony Husband, award winning cartoonist and author of ‘Take Care Son My Dad Living With Dementia’ when he presented his book at an event in 2016. Through his personal experience of dementia we knew instantly there was a synergy.
Since then we have collaborated on a number of projects for people with dementia and their families and were inspired to do more. After many conversations, a keen interest from a publisher, I began to reach out through my networks to gauge interest from family carers.
One by one we aligned with 6 families offering them a platform to share their stories and ‘United Caring For Our Loved Ones’ was borne fully illustrated by Tony Husband, a creative genius. It was important to include diverse backgrounds and contexts which I believe we have created with the utmost sensitivity making it universally relatable.
‘United’ reflects on: the impact of receiving a diagnosis, the importance of person-centred care and social inclusion; the power of meaningful engagement, partnerships, peer support and much, much more.
Our aim was to help families feel less isolated and alone. Equally important was to appeal to professionals as a useful resource to assist in their understanding of dementia and disband the myths and stigma.
A short read, not to be underestimated, full of illustrations making it unique, like no other. We call it ‘the little big book’ full of heart.
Bio
Gina Awad was honoured in the Queen’s birthday list in June 2018 with a British Empire Medal for her voluntary services to people with Dementia in Devon. This accolade adds to her other 5 awards received locally, regionally and nationally.
Gina founded and leads the Exeter Dementia Action Alliance (EDAA). EDAA empowers and inspires organisations and businesses to raise awareness and deliver dementia accessible services for people living with dementia and their families. Her vision believes every business and organisation respects and values people living with dementia and their care partners/families and enables people with dementia to live independently and empowered to participate in their community.
Gina hosts a quarterly radio show on Phonic 106.8 FM ‘Living Better with Dementia’ with over 70 shows to tune into at your leisure.
One Response
This little book gives a lovely illustration of people with Dementia/Alzheimer’s who behave in many different ways and is beautifully illustrated and an easy read. Well done Gina and Tony