3 people onstage in a play

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Watch ‘The World Turned Upside Down’: A film about dementia and communication

Co-created by people affected by dementia, the IDEAL research project has released a new film that focuses on the importance of effective communication around dementia.

23 September 2022
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15 comments

What is 'The World Turned Upside Down' about?

The World Turned Upside Down is a film that delves into the reality of living with dementia and caring for a person with dementia. The film depicts both a play and the process of creating it, as well as the audiences’ reflections during the play. 

Co-created with people affected by dementia, the play explores scenarios at different points of characters’ experiences with dementia, from getting diagnosed and sharing that diagnosis with family members to caring for a loved one living with dementia.  

Exploring communication around dementia

Before watching the film, you can download a screening pack created to accompany the film. This pack helps to guide the viewer through the film, offering discussion questions around the different scenarios. Watching and sharing the film with the screening pack is a great learning resource, a tool that can be used within groups to discuss some of the key issues explored in the film. 

Watch ‘The World Turned Upside Down’

The artwork for ‘The World Turned Upside Down’ was designed by Willy Gilder, a person living with dementia who expresses his experiences through art. Willy regularly posts pictures of his art on Twitter, under the handle @willygilder01.

The world turned upside down film poster art

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Who created the play?

‘The World Turned Upside Down’ comes from a large dementia research project called IDEAL, which is an Alzheimer’s Society Centre of Excellence. IDEAL has been running since 2014, and is based at the University of Exeter. It focuses on improving the lives of people with dementia and carers living in the community.  

Where did the idea come from?

The idea for ‘The World Turned Upside Down’ arose from discussions between Director Paul Jepson and Professor Linda Clare, who leads the IDEAL research programme. Through these discussions they decided to use theatre to share research findings in a way that could make a difference to people’s lives, and portray what it is like to live with dementia in a realistic way.  

The programme’s research findings have already helped lots of people living with dementia and carers, through resources like the Living with Dementia Toolkit.  

What does IDEAL do?

IDEAL has over 50 research publications that are helping Alzheimer’s Society and other dementia organisations, as well as clinicians and practitioners, improve and rethink how we can best support people affected by dementia. 

Watch the film and share your thoughts

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15 comments

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Mary-Teresa Branton
says
23 October 2022 at 3:51 pm
I found this film very moving -and beautiful in parts. I wish I’d known more about dementia when I was caring for my mother as her quality of life deteriorated. We need to learn about dementia before it affects us personally because sadly there are no 2nd runs after discussion of each little real life scenario, and the hurt/fear/damage has already been delivered. I’d love to see this brilliant film shown widely in every town across uk. If it helps one more family it’s worth it!
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Claire Pentecost
says
25 October 2022 at 5:21 pm
Hi Mary-Theresa Thank-you for telling us how you were personally affected by this film, I am glad that you saw a balance in the sad and nicer moments! Hopefully raising some awareness via the film goes some way towards that. Sorry to hear obout some of the difficulties you experienced and thank-you for pointing out that access to useful information at the right time is very important. This year we launched our Living with Dementia toolkit, https://livingwithdementiatoolkit.org.uk/ and have been promoting it as far and wide as we can. There is a lot if very useful, practical and hopeful tips from real people with dementia, we really hope that this can be a comprehensive resource to learn about dementia for those at any point in the journey.
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Meg Cherry
says
11 February 2023 at 10:26 pm
I completely agree with your comment. My mother passed away last month, with complications brought on by her Parkinson’s and dementia. I flew in to be with her for 2 x 4 week periods last year to give my father and sister some respite. They live in France and I am in Australia. I watched your play and comments today with a great deal of regret and sadness that I did not know how to interact with my mother when I was living with her and my father. I got angry and frustrated when I should not have, and more likely than not exacerbated her own anxiety. I am so very sorry that I behaved this way, and thoroughly agree that families who have a diagnosis of dementia in their midst should have to watch this programme. It was so incredibly helpful, and so very moving.
Reply
Claire Pentecost
says
10 March 2023 at 4:42 pm
Thank you Meg. I am sure many people can relate to feeling how you did. I am not sure if the film can help us to change, but recognising emotions in others may be reassuring, and may be a start for some to plan ahead. We are trying to share the film as widely as possible and so you are free to copy and paste the link in your own social media posts, or emails as there is no copyright. We are delighted that some have taken up the invitation to screen the film at small local venues, so thanks for your endorsement!
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Barbara
says
21 October 2022 at 10:54 am
I think this film provides excellent communication training for any family whether they are facing dementia or not and that the scenarios illustrate how active listening works in practice. Focusing on the person you are talking to rather than your own feelings or frustrations, you are both able to express more calmly what you are thinking so that both parties feel heard. These are highly emotive situations. The actors convey how the person with dementia is not trying to give their family a hard time, they are having a hard time. They demonstrate how just a little patience can really make a big difference. The elderly person is then not infantilised, their independence is respected and dignity remains intact. In turn, the elderly person is given space to respect how difficult the situation and decisions to be taken are from the other person's perspective. I hope this film gets lots of views.
Reply
Claire Pentecost
says
25 October 2022 at 4:54 pm
Hi Barbara, Thanks for your thoughtful comment. It is very good to hear that you think the film can be useful, and it is very interesting to see how you have explained active listening. It is not easy to do but seeing it work in practice seems to be helpful. You have also highlighted some very good points about both parties views being important, the value of patience, and understanding the need for independence. It sounds like you have good insight into these matters so thank you for the endorsement and for the very astute observations.
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Kartar Badsha
says
14 October 2022 at 4:24 pm
I was diagnosed with some 6 years ago. I am not sitting down but fighting and crying in the night of the cruel remarks and people talking during the day. Sad I have published a number of scientific papers and also ran a number of charities but slowly the reality is setting in and outlook looks bleak but I shall carry on. In my area, been old but still driving is a fertile ground for getting parking tickets. This increases if you due to numerous reason just pay. This makes you an easy target.
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Alzheimer's Society
says
17 October 2022 at 3:59 pm

Hi Kartar, thank you for your comment.
 

If you'd ever like to talk, you can call our support line on 0333 150 3456 to speak with one of our friendly advisers. They will listen and provide you with any advice you may need.

Take care and please do call our support line if you need to.

Alzheimer's Society blog team

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Maggie Bartlett
says
08 October 2022 at 6:07 am
My husband was diagnosed with vascular dementia 9 years ago. Sadly Tony is now in a nursing home at end stage and your film evoked so many memories and events that are so familiar they made me cry. I appreciate that every case and diagnosis varies greatly but found that your film highlighted the similarities that I believe every patient and family go through. I have given a some talks via Cambridgeshire crisis team to student mental health nurses, carers and managers, I call it Living well with dementia, until you can't. I hope that this film is sent to every crisis team and mental health training establishment in the UK because I believe it shows how empathy and patience is paramount to caring for our loved ones who have this devastatingly sad diagnosis.
Reply
Catherine Charlwood
says
11 October 2022 at 4:23 pm
Dear Maggie, I hope it was in some way a cathartic cry rather than an unhappy one. We've been staggered by how much people have responded to the film: it's more than we could have hoped. Even when we knew what was going to happen, both the play and the film were really powerful to the team. Fantastic to hear that you are actively sharing your experiences with future practitioners and professionals. We hadn't aimed it at crisis teams and mental health trainers, but this is really useful to know and we'll see if we can get it to those teams. Take care and all best wishes to Tony, Dr Catherine Charlwood, IDEAL team
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Janice Nunn
says
05 October 2022 at 11:29 pm
I watched the film and through my work in Social Care have sadly heard many similar stories. There is a lot to learn about in the scenarios and start discussions about good practice. I have available a local Care Home with a 15 seat cinema and would love to show it but need to work out an invite list. Quite difficult as people associate films with enjoyment not necessarily education!
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Claire Pentecost
says
06 October 2022 at 11:53 am
So pleased that you think the film is useful Janice and that you are considering screening it. I see you have emailed us [email protected] thank-you. We would love to know how you get on.
Reply
Maureen Lomas
says
04 October 2022 at 10:50 pm
Really interesting scenarios - giving very positive guidance for coping and insight into simple daily situations. It would be difficult to create a ‘conversation’ to discuss what/when/where with family members in the event of being affected by dementia because we do not have experience living with it until ‘it happens’. Every individual is unique in how they are affected, and relationship, temperament/personality and personal circumstances, of family members will vary enormously.
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Claire Pentecost
says
06 October 2022 at 11:50 am
Hi Maureen, that is a very good point! It is hard to anticipate how we will respond, but doing the play made us realise that we have choices in how we behave, but anticipating or changing our usual behaviour is not easy to do in practice. You are right, people’s reactions will be based on many things, and partly will be to do with their understanding of dementia at the time. Some people may have ‘experience’ of dementia before it affects them personally. We were heartened (and encouraged) by the understanding and insight by some of the sixth-form college students who had personal experience via an older family member, one was a carer– they may be better equipped than people with less direct experience in the future. We’re also doing our best to help more people understand dementia, such as through our Living with Dementia Toolkit. The ‘Adjusting to a diagnosis’ page offers an insight into having those initial conversations https://livingwithdementiatoolkit.org.uk/stay-positive/adjusting-to-a-d….
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Claire Pentecost
says
24 September 2022 at 8:03 am
This is the collaborative work of people with dementia and carers, academics of dementia, professional actors and a professional director. We hope the film inspires thought and changes views. Please post your feedback as it really can help us. Thanks Claire, IDEAL
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