Why collect and share Magic Moments and stories in dementia care, by Nigel Hullah

‘Magic Moments in dementia care services’ is a storytelling approach to learning and development.  Nigel Hullah has been working with Improvement Cymru to help shape the project with his own experiences since diagnosis of dementia.  Here he tells us what the project has meant to him.

All through 2018 and 2019 Improvement Cymru facilitated a series of workshops and events with stakeholders to find out what matters to people.  People living with dementia, family, carers, practitioners, and managers joined together to share and talk about their experiences of services in a safe space free of judgment or criticism.

It was identified early that in most cases stories that exemplified kind, compassionate, heart-warming care and participation were often not recorded or included in formal care contacts – I felt this a real shame and missed opportunity.

As a participant, I found the whole process affirming and supportive.  Of course there were stories with tragic outcomes, but I felt empowered to tell my story and reflect on how compassion and understanding helped and still helps support me on my journey.

Much of what developed in these workshops found their way into the Dementia Standards. Compassion, kindness, accessibility, and partnerships are recurring themes in the All Wales Dementia Pathway of Standards.

Stories and storytelling fulfil a deep need to understand ourselves, our journey and each other as fellow human beings. These stories themselves speak from the heart to the heart, shifting perceptions as well as minds and help refocusing efforts to have maximum impact.

Sharing these stories and their message means it’s possible to build on the ability to share experiences to help improve services and birth a sense of ownership by all participants. 

I believe stressing disability over opportunity has consequences that can foster a decline in the narrative agency for people affected by dementia.

There is widespread recognition of the benefits of the stakeholder or citizen involvement in public policy both at an individual and collective level, and these initiatives play a major role in reducing the notion of disability over opportunity. Here is an opportunity to have sight of what is important to those of us who are affected by dementia through the expressions and testimony found in the booklet. 

During the workshops it has been my pleasure to witness people with a diagnosis and their supporters overcome doubt, lack of experience and confidence to tell their stories.  They have changed hearts and minds with content that cannot be questioned, or motives doubted, as the testimony in the booklet illustrates.

No one who reads these stories will not be affected by the purity and bravery of the contributors affected by dementia including the people that deliver care. The people who delivered these moments were more concerned with their purpose than their own comfort.

We witness in this document extraordinary examples of courage.  People speaking for the first time, wracked by anxiety and self-doubt, but doing it anyway.  Refusing to be defined by their diagnosis, demanding a place where decisions are made.  Sharing the most difficult aspects of their lives and enabling a better understanding of the impact of a diagnosis.

The stories and this booklet can help others use this approach for learning and shaping care. I hope care staff, practitioners, teams and organisations take this booklet and set about changing dementia care for the better.

So, we should salute all those whose voices have been heard and those who will be heard in the future, and all those who battle daily with the changes a diagnosis can bring. Let us celebrate for everybody is beyond brave in their own way, our loved ones, friends, advocates and allies.

The Magic Moments project and subsequent booklet was inspired by the Developing Evidence Enriched Practice (DEEP) developed by the Wales School of Social Care Research (Andrews et al 2015).  The booklet can be found here