Co-designing a Dementia Portal for Warwickshire and Coventry

Change management

Warwickshire County Council and Coventry City Councils are two neighbouring councils with quite different challenges – Warwickshire is a large county with a mix of urban and rural areas, and a long border with the urban areas of Coventry and Birmingham. Coventry is a substantial city on the south-eastern edge of the West Midlands area. However, Katie Herbert as lead Commissioner for dementia services at Warwickshire County Council, together with Elizabeth Edwards, her counterpart in Coventry City Council, became aware during strategy delivery and planning that both councils faced similar challenges in relation to improving the quality of life of people affected by dementia and managing the consequent demand on social care and support.

In 2012, the two councils set up the Coventry and Warwickshire Living Well with Dementia Partnership which involves social care, social care providers, the NHS, third sector organisations and a group of people with dementia and their carers. These are mainly people at the earlier stages of dementia who can make an active and meaningful contribution to the Partnership. They were selected from Warwickshire’s Transformation Assembly (a group of service users and care-givers who have interest in co-producing transformative work with the council) and recruited via Alzheimer’s Society Dementia Cafes.

The development of the portal involved both consultation and co-design activities with people with dementia, their carers and public, private and third sector organisations. The starting point was a consultation exercise involving people with dementia and carers in early 2012. People said that they found it difficult to understand the characteristics and implications of the condition and they wanted to know what to do following a diagnosis. People also reported that they felt that public perceptions of dementia were negative and tended to focus on the later stages of the condition rather than focusing on people’s ability to ‘live well’ with the condition. Their key message was that they wanted information to be kept simple.

Tony Robinson, as part of Warwickshire Transformation Assembly, was co-opted to be a users' and carers' representative on the Warwickshire County Council's Dementia Strategy Board. His role was to help to assimilate data received for use in the new Portal, and to identify gaps which needed filling.  Before the launch of the Portal he helped with editorial “tweaking” to improve its presentation. He also helped development of the Portal by sharing information about the kind of support that he would have found helpful in his caring role in terms of information and advice. 

The partnership specified what information was required, what format it should take, and how it should be promoted and integrated as part of care pathways. The Portal was then built by Warwickshire County Council and launched in November 2012. It is hosted on the website of Warwickshire County Council, to which Coventry City Council makes a link. The information is also available as print-outs in factsheet format for people who do not have access to the internet. There is also a version in App form which is accessible via mobile devices and tablets which can be accessed without internet coverage.

People with dementia and carers were involved in the project from the outset, selecting content, pictures, format, branding and colours for the Portal and they remain involved in its updating and evaluation. 

The Living Well with Dementia Partnership also developed social media promotional channels at the same time as developing the Portal, including the Living Well with Dementia blog and a Twitter account. These are used to help keep content fresh - the blog links to the Portal’s ‘latest news’ page and Twitter acts as a feedback mechanism.

This case study was written by Katie Herbert and Tony Robinson in February 2014.