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United: Caring for our loved ones living with dementia

A new book – United – is a poignant glimpse at lives affected by dementia across the country. Each family story, while revolving around a common diagnosis, reveals the unique and affecting ways dementia unfolds. The book was compiled by dementia expert and activist Gina Awad, and features illustrations from renowned illustrator Tony Husband throughout. Here Gina talks about her inspiration for the project.

As a little girl I visited care homes with my grandmother who used to engage with the residents in creative arts. What I noticed was not those who engaged, but those who didn’t. As an 8 year old I couldn’t articulate what I felt in words but the feelings stayed with me for years until as an adult I reflected back on those times. A sense of loneliness, isolation and  lack of connectedness are words that resonate from these visits and I now know many were living with dementia.

Over 40 years ago very little was known about how to ‘be with’ people living with dementia but I have a great sense of empathy and desire to connect and be with the person where they are in the moment.

My Health & Social degree degree with the Open University in 2011 ignited my interest in Dementia and my childhood memories. This sent me on a mission to make life better for people living with dementia by raising much needed awareness.

I met Tony Husband, a renowned cartoonist several years ago when he shared a heartfelt presentation of his book ‘Take Care Son’ about his dad who lived with dementia. Our mutual passion for raising awareness was evident and ever since we have collaborated on a number of dementia projects.

We both felt we wanted to create a book, and the idea of offering a platform to families affected by dementia to tell their stories really appealed.  The process of navigating the health and social system is exhausting not withstanding the complexity of a dementia diagnosis for the person, their families and friends. A tremendous challenge we felt we could help with and decided to shine a light on the impact.

After several conversations together and a keen interest from Little, Brown Book Group, ‘United’ was born.

Over several months Tony and I reached out through our networks and in turn offered the opportunity to families who may be interested in our idea.

From there we connected with these wonderful families over zoom. My conversations with them included active listening to their experiences with intent, compassion and curious questioning whilst Tony sat in the background absorbing the content.

Following this Tony set about creating sensitive illustrations to encapsulate the stories. We worked together to compile each draft story, adapting images with accompanying narrative for the families to review and comment on. Relevant changes were made and the second draft was shared before Tony drew up the final illustrations. Over the course of 18 months we had our completed family stories and were ready to put the final touches to ‘United’.

We believe it will make a marked difference to families affected by dementia offering a universal, relatable and timeless appeal. In addition it is packed with accessible resources which will be of interest to professionals as well as inform and educate the general public more widely.

Our aspiration would be to see it translated into other languages and who knows there could be a second book in the future.

 

You can buy United by Gina Awad and Tony Husband via Amazon Smile, which supports the work of Alzheimer’s Research UK with a donation of revenue back to the charity.

 

About the author

Gina Awad

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