Over 900,000 people live with dementia in the UK. Most live in their own homes with family support. National policy emphasises the importance of quality of life or ‘living well’. This is important for both those affected by dementia and the services and resources in place to support them. Limited knowledge, healthcare service pressures and skills gaps mean there is surprisingly little understanding about how to achieve this.
The IDEAL programme of research has set out to tackle this issue. Researchers have worked alongside people with mild-to-moderate dementia and their family carers to investigate how their experiences could be improved.
The IDEAL programme team shared their developments:
Living with Dementia Toolkit
People with dementia and carers told us they need realistic but positive information.
Initially responding to this need during the pandemic, the comprehensive Living with Dementia Toolkit shared IDEAL evidence in an accessible online format.
The toolkit was co-produced (produced jointly with people with dementia and carers) and it has:
- been accessed by 23,000 users from 130 countries
- been accepted into the WHO Global Dementia Observatory Knowledge Exchange Forum
- featured on numerous dementia information websites as a key resource.
Printed guides to the Toolkit were distributed nationally across ICBs, local authorities and support groups, influencing systems by promoting the voice of people with lived experience of dementia.
My Life Questionnaire
People with dementia and carers told us they want more personalised support.
A group of people with dementia worked with IDEAL researchers to co-produce an accessible and scientifically validated measure that enables practitioners to better understand a person’s needs and plan personalised support.
Beginning with 1,339 open-ended responses from IDEAL participants, an iterative process of item selection, testing with IDEAL participants, and optimising structure and design resulted in the ‘My Life Questionnaire’.
This evidence-based resource is now changing service delivery. It is being used to tailor post-diagnostic support in Oxleas NHS Foundation Trust. Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV) are exploring its use as a Patient Reported Outcome Measure (PROM) in dementia services.
‘The World Turned Upside Down’
People with dementia and carers told us they need better understanding and greater inclusion.
IDEAL evidence about communication led to co-production of the play ‘The World Turned Upside Down’, with members of our involvement group helping choose the scenarios depicted and training the actors. Adopting a forum theatre style, audiences were invited during three performances to suggest how the improvised scenarios could be replayed to achieve better communication.
This was converted into an innovative documentary film incorporating performance, rehearsal, and reflection, which has improved patient/service user outcomes by increasing public and practitioner awareness.
Over 7,500 people have watched the film via YouTube and 15 public screenings. Videos of individual scenarios are being used in university modules and NHS CPD programmes.
Building on this, a further project involved people with dementia and carers in creating a new one-act opera, ‘The Bridge’, about adjusting to a diagnosis of dementia.
What’s next?
Further co-produced IDEAL resources are forthcoming, including a new tool for commissioners and practitioners, and a book for a general audience.
Living with Dementia Maps
We will shortly release our ‘Living with Dementia Maps’, one for people with dementia and one for carers. These combine IDEAL evidence reported in over 80 published papers into easy-to-use resources, enabling practitioners and commissioners to consider all the aspects of a person’s life that are affected by dementia.
The resources were co-produced with commissioners, service managers and practitioners to ensure relevance to practice. Each map contains an infographic to support service planning and a set of prompts that practitioners can use to facilitate rich conversations to explore strengths and needs, identify difficulties and plan personalised support.
Reconsidering Living with Dementia
We are working with our involvement group to co-produce a book based on IDEAL evidence for a general audience. Under the overall title of ‘Reconsidering Living with Dementia’, each chapter includes reflections by the involvement group and a manifesto statement about what they would like to see happen or change.
These statements are drawn together into a call to action in the final chapter. The first draft is currently under review, with publication expected in 2025.
…and there’s more
In the future we will continue engaging with ICBs, practitioners and others interested in using IDEAL resources. Potential for impact has been enhanced through connections via ARC infrastructure, cross-ARC collaborations including the National Priority Area in ageing and dementia, for which Exeter is PPIE lead, and the NHS Futures National Dementia Programme forum.
Experience of working on translation and impact with IDEAL stakeholders stimulated a successful application to become a new NIHR Policy Research Unit in Dementia and Neurodegeneration (DeNPRU Exeter). Many of the people with lived experience who contributed to IDEAL have joined the DeNPRU Exeter Knowledge Exchange Community, adding capacity to expand our reach.
Resources
- The Living with Dementia Toolkit: www.livingwithdementiatoolkit.org.uk
- The Living with Dementia Toolkit on the WHO Global Dementia Observatory Knowledge Exchange Forum
- Journal article for ‘My Life Questionnaire’ “Evaluating ‘living well’ with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire”
- The World Turned Upside Down (including the YouTube link)
- The World Turned Upside Down on Alzheimer’s Society’s blog
- PenARC blog about ‘The World Turned Upside Down’ screening, incorporating audience feedback
- ‘The Bridge’ opera