Dementia Insights: Melting hearts and minds with evidence

These stories were created at a Patient Voices workshop for people with dementia, their carers and partners in Lancashire in March 2015.
Statistics tell us much about populations, but cannot tell us how it feels to be an individual with dementia or caring for someone with dementia. We need to hear the stories told by people affected by dementia if changes in policy and practice are to be effective, meaningful and appropriate.

To gain insights into the experience of people affected by dementia by giving individuals the opportunity to create their own digital stories about their experiences. When shown to practitioners and policy makers, their stories would illuminate what really matters to them about dementia.
Eight patients/carers affected by dementia came to a Patient Voices® reflective digital storytelling workshop. Over two days, each person identified and distilled their personal story, drafted a script, recorded a voiceover, selected photos for, and edited a short audio visual piece about their life with dementia.
The stories revealed some unexpected themes, and provided valuable evidence about what needs to improve, particularly in relation to suitable environments for people with dementia (PWD).
The process illuminated issues in supporting PWD and their carers through creative processes, the interactions between PWD and their partners/carers and some of the social/family pressures and attitudes to PWD.
The stories offer viewers a chance to see things differently and think about things differently and, when shown to a range of professionals from housing associations, the police and allied health professions, enabled these groups to see more clearly what is needed in order to create healthy environments.
Stories and storytelling fulfil a deep need to understand ourselves and each other as fellow human beings. The opportunity for people with dementia to think about and articulate their story and then to create their own audio visual piece which can be heard anywhere in the world in itself contributes to their sense of agency, purpose and well-being.
The stories themselves speak to hearts as well as minds, shifting perceptions and refocusing efforts where they will have maximum impact. Based on the stories that came from the workshop, a need for standards for housing and commissioning – and a related self-assessment tool within which “The main principle being applied in this tool is that all available assets and resources need to be combined, both to create the conditions that reduce the risk of developing dementia, and to develop a framework of support to help those with dementia, their families and carers, to have as good a quality of life as possible.”

The expert guide
Making decisions was always something Barry was good at. With the diagnosis of dementia, there is a whole host of decisions to be made and Barry must learn new approaches and new ways of negotiating.
How could service providers help make the decision-making process easier?

Tower of strength
Barry had always been the tower of strength in the relationship. The shock of a diagnosis of dementia is not helped by the denial of family and friends and now Linda must learn to find her own strength.

Learning to navigate
Pat talks about how the roles in her relationship with her husband have changed after his diagnosis and as his condition changes – and how she has had to learn new skills along the way.

I do the best I can
Tom loves his wife Pat – he always has and he always will. They’ve always worked as a team. Now that Tom is affected by dementia, it’s more important than ever to work together.

Stripped of dignity
While it’s exhausting to care for someone with dementia, that doesn’t take away the motivation to do more for our loved ones. And someone needs to listen.

Complex lives
Zakyeya plays many roles in her complex life. Being a doctor doesn’t diminish the demands of the other roles at work and at home. Finding a way to integrate all the roles has been the first step in improving the health and wellbeing of the entire family.

I’m still me
This is Barbara’s story