Member showcase: Keith Oliver

My involvement in the new Reconsidering dementia book series published by Open University Press grew from my contribution to a book published in 2019 in which I co-authored a commentary about Tom Kitwood in chapter five. It contained the Kitwood flower, a model I use to live my life, and which served to be the lens we used to examine the lives of 15 people living with dementia for a new book, ‘Talking with dementia reconsidered’.

I co-wrote the book and believe it authentically places people living with dementia at the centre. It also examines in some detail the process of how this unique book was written – central to this was a very focused and committed team. The book then looks beyond these two main elements and examines the current and future dementia landscape though the eyes of myself, a person living with young onset dementia; Reinhard, a working clinical psychologist and Ruth Bartlett, an eminent academic.

We began work on the book in the summer of 2021, towards the end of the pandemic and as people were beginning to adjust to life post-lockdown, which brings a unique element to the book. Interviews with the 15 contributors took place either by Zoom, or in the less formal setting of Reinhard’s garden. The interviewees touch on how lockdown and the pandemic affected them, and how they link this to the Kitwood flower is something that had never been written about before.

The book centres around these 15 activists – allies of mine – who devote their time to changing people’s view and ideas about dementia. The book is the first of its kind to demonstrate both the similarities and differences in people’s experiences with dementia. Having a diagnosis doesn’t mean someone loses who they are as a person and this means we can still relate to one another, which is what this book encompasses.

Once the interviews were complete, Reinhard and I were supported by students in preparing, then writing the book. They were mostly psychology students on placement with our local mental and social care trust. The first group of students supported us by recording and making transcripts of the interviews. They were followed by the next group who carried out thematic analysis of the scripts after me and Reinhard had highlighted quotes relevant to the petals of Kitwood’s flower. Additional students assisted with notetaking and in the writing of the book, making contributions to illustrate the importance of the intergenerational model of working used.

Reinhard led me in thinking about the kind of questions we could use to generate interesting responses from our contributors. These semi-structured conversations took us into the deep recesses of people’s lives. Reinhard and I then met frequently with the students to talk long and deeply about Kitwood, dementia, Buber and the care system with the students taking diligent notes. This then informed a significant part of the book.

To introduce some creativity into the mix, I invited some friends with dementia to contribute a poem to launch each chapter in the section based upon the flower, and the results are remarkable, moving and heartfelt. Each book in the series has a cover designed and created by a person with dementia and I relished the challenge of producing something for this book.

I want the book to sit proudly with its siblings in the series and to make a difference for anyone generous enough to pick it up and read what all who have contributed offer. I wanted it to make people proud of what we have achieved. I wanted to showcase the power of working in a committed team of both professionals and volunteers. Everyone went the extra mile and more.

I wanted Dawn, Sam, Hannah, Reinhard and Lara who were my closest allies to be proud of and to remember when I cannot anymore what we achieved together. I wanted most of all to show what life is really like for a group of very different, very diverse and very interesting people living with dementia. And what they make of their lives through a model I hold very dear and close to my heart – the Kitwood flower – which runs through every page of the story and is the logo for the book series.

• Keith Oliver was diagnosed with young onset Alzheimer’s disease at the age of 55. He is a former Young Dementia Network steering group member and is a Dementia Service User Envoy for Kent and Medway Partnership NHS Trust.
• Keith was supported in the writing of this article by Lara Stembridge, an NHS volunteer.

If you would like to purchase a copy of ‘Talking with dementia reconsidered’ the code OPENUP20 can be applied at checkout for a 20% discount on orders of the book via the McGraw-Hill website.