Is it the person with dementia who has difficulty communicating, or is the problem other people?
What effect does not being heard have?
Can the way we express ourselves shape relationships?
…and what are you going to do about it?
The World Turned Upside Down is a play with a purpose: to engage the audience in a theatrical conversation to explore possible outcomes to communication challenges faced by people with dementia. Four key scenarios were presented where the situation could be made better or worse by someone interacting with a person with dementia.
The audience contributed to how the scenes played out, as you enter the world of dementia through theatre. The rehearsals and the play were filmed to capture the experiences of the company and audience as the scenarios developed and the resulting documentary film will be released later this year. A production which came out of the IDEAL dementia research programme at the University of Exeter, and directed by Paul Jepson, The World Turned Upside Down was informed by both research and real-life experiences of people with dementia and carers who have been involved throughout.
With thanks to Willy Gilder, who lives with dementia, for the incredible production artwork.
The new Living with Dementia Toolkit has launched and is now freely accessible online at this web address https://livingwithdementiatoolkit.org.uk/. Based on research evidence and lived experience, this toolkit has been co-produced with an involvement group of people with dementia and carers. The resources are organised into five themes:
- Stay safe and well
- Stay connected
- Keep a sense of purpose
- Stay active
- Stay positive
We encourage you to explore it at your leisure, share within your networks and send us your feedback at IDEAL@exeter.ac.uk.
'The Father' screenings at Exeter Phoenix - 18th June 2021
The IDEAL Programme research team formed an expert panel to offer responses to 'The Father' in the context of our research, before opening up to audience Q&A in June 2021.
Why is IDEAL interested in 'The Father'?
‘The Father’ is fundamentally about the relationship between a father with dementia and his daughter who is trying to care for him. We’ve been studying how people with dementia and their carers (who are often family carers) living at home cope best together.
We’re particularly interested in which things make a difference to this relationship between a person with dementia and their carer, which we call a ‘dyad’. We all recognise that some things make caring relationships easier, others make it harder, but by gathering evidence from well over 1,000 people with dementia and 1,000 carers, IDEAL will be able to make strong recommendations not just to people living with dementia, but also those people – nurses, doctors and policymakers – who help them.
We've also put together a screening pack to complement your viewing of 'The Father'. It can be used with a group, if you plan to watch together, or as an individual to help you discuss the film. Download it here.
What does IDEAL’s research evidence tell us about dementia and caregiving relationships?
The IDEAL programme studies what it means to ‘live well’ with dementia, and which things affect living well. In a caring relationship, the experience of dementia is shared by both people, and the experiences of each person – the person with dementia and the carer – can affect the other.
We’ve found that:
- How the carer experiences caregiving makes a difference not just to them, but also to the person they are caring for. For instance, if a carer thinks of themselves as stressed, then the person with dementia rates their own well-being less positively. Click here to read an accessible summary of this article.
- If either the person with dementia or the carer is struggling with depressive symptoms, then this affects the other person. We need to look at the combined effect of depression in caregiving relationships. Click here to read an accessible summary of this article.
- If either the person with dementia or the carer views the quality of their relationship as low, they have poorer quality of life. How each individual views the caring relationship really matters, and we need to support people to maintain positive relationships. Click here to read an accessible summary of this article.
There’s lots more we could tell you about, and we’re still gathering and analysing data! All our evidence suggests that the relationship between the person with dementia and the carer has greater effects than previously thought, and that this needs taking into account when we create policies to help people live well with dementia.
Festival of Social Science 2018 'Living Well with Dementia: the IDEAL and A Life More Ordinary Projects
On the 6th November this free event bought together two important strands of the IDEAL programme: understanding the factors that can help people with dementia to live well and the role of creative arts in providing new insights into how people with dementia can live well.
During the event, Prof Christina Victor presented the latest evidence on living well with dementia from the IDEAL study and this was followed by a talk from photographer Ian Beesley, an internationally-acclaimed artist involved in our creative arts-based `A Life More Ordinary’ project.
One day workshop in Bangor University April 5th 2017
Living well with dementia: The IDEAL study: Dr Catherine Quinn, REACH, University of Exeter & Hannah Scott (PhD student) WISERD, Cardiff University
Living Well with Dementia - Wednesday May 17th 2017 London
To mark Dementia Awareness Week, we will host a seminar will focus on promoting quality of life for people with dementia and their families and carers. We will also present our interactive public engagement activities, devised to increase awareness of the challenges faced by people with dementia. The program will include a presentation on Living Well with Dementia by Professor Christina Victor, Brunel University London
To register for the event click here
Tinted Lens: A Festival of the Mind, Memory & Ageing - Wednesday May 17th 2017 Cardiff
Celebrate Dementia Awareness Week by joining us at our relaxed Dementia Friendly screenings, engaging theatre and drop-in craft workshops, a Virtual Reality experience, guest speakers, stalls and much more. Everyone is welcome and you’ll be helping to challenge the social exclusion of people living with dementia, while also having a great time.
To find out more click here
A Life More Ordinary events
- 30th October- The first in a series of chapbooks to be produced as part of the project was launched on 30th October 2017. Ian Beesley, Ian McMillan and Tony Husband will be returning to Exeter to catch up with the members of Age UK Exeter's Budding Friends group. The chapbook presents some of the images and poems produced during the workshops held in Exeter in 2016. Read more about the launch here.
- A series of workshops have been taking place in Oldham throughout the year, whereby Ian Beesley (photographer), Ian McMillan (poet) and Tony Husband (cartoonist) held a series of workshops in Oldham with the 'Ragamuffins', a group of people with dementia, their partners and volunteers.
- August- Ian Beesley and Tony Husband took part in event run as part of the ‘Right to Get Out and About’ project organised by IDEAL project partner Innovations in Dementia. It involves three Dementia Engagement & Empowerment Project (DEEP) groups: DEEP Vibes Scarborough, York Minds and Voices and Face it Together (FIT) in Bradford.
- 9th/10th May- Ian Beesley (photographer), Ian McMillan (poet) and Tony Husband (cartoonist) held a series of workshops in Canterbury and Maidstone in Kent to produce further 'A Life More Ordinary' art work. Further dates are being planned.
- Dementia: Life, Art, and Research 8 November 2016, 18.30 - 20.00, Exeter Phoenix. This varied event focuses on engaging members of the public with the topic of dementia in terms of lived experience, art, and world-leading research.
- During Dementia Awareness Week 2016 Dr. Alex Hillman discussed IDEAL as part of the expert panel discussionpost the screening of Away from Her. The screening aims to engage audiences in dementia research through cinema.
- Hillman, A. (2016, Apr.). What can medical sociology offer in understanding medicine, health and illness? The case of dementia. Presentation at the public engagement event in Chapter Arts Centre in Cardiff.