Co-designing a Dementia Portal for Warwickshire and Coventry

When Tony’s wife Isobel was diagnosed with Alzheimer’s nearly ten years ago, he was given many leaflets with brief explanations of what services were available.  The quality of information in many cases was poor, fragmented or lacking. Warwickshire County Council developed the Dementia Information Portal to help ensure that quality information is available to all who wish to find out more about dementia, including people with dementia, their care-givers and families, health care professionals and the wider public.

What makes the Warwickshire County Council Dementia Portal a good example of information provision for other local councils to model upon is that it was both co-designed with people with direct experience of dementia and is shared with Coventry City Council.

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The objective of the website is to raise awareness of dementia and improve post-diagnosis support and care. Specifically, it aims to reduce stigma and to challenge public misperceptions of dementia, to raise awareness of local services and to support and promote the idea of living well with dementia, including advice on healthy lifestyles.

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.

Research has been undertaken on the experience of Portal users, to see whether it has made a difference to their lives. Feedback from people who have used it has been very positive, and people say it has helped them to make decisions and to feel more confident and well-informed. Warwickshire County Council plan to undertake a formal review of the Portal to fully understand impact on individuals.

The Portal has proved to be a useful tool for bringing together stakeholders locally to discuss shared aims and objectives about dementia, and to enable the delivery of local and national dementia strategies. For instance, in conjunction with Public Health Warwickshire additional content and self-help tools have recently been launched, directly aimed at the person with early stage dementia, These additional pages were co-produced with people with dementia. Warwickshire’s first ‘Living Well with Dementia’ conference, which took place in September 2013, led by Warwickshire County Council, showcased the strategy and the innovative work taking place locally.

As Tony Robinson suggests, the engagement of people affected by dementia in the consultation and design process has been worth the effort:

“This happened soon after Isobel passed away.  To me it was important that the views of current users should take priority. …It would have been a godsend seven years ago”.

The Partnership established current levels of awareness and understanding about dementia and available services through a citizen survey in July 2012, before the Portal was launched. This found that awareness levels were low. More than 400 people responded, and many of them have agreed to be surveyed again, to see what has changed since the launch.

Promoting and launching the Portal cost less than £3,000.

• Engage with people with dementia and their carers early in order to understand their needs and listen to what they say
• Engage with relevant stakeholders to ensure that the information is as accurate and high-quality as possible, and that all partners are signed up to shared aims and anticipated outcomes.
• Identify what information is already available and where the gaps are.
• Ensure that partners are signed up to signposting people to the Portal at specific points during their journey with dementia. For instance, the memory assessment service has given a commitment that they will provide leaflets about the Portal to people following a diagnosis.

Coventry and Warwickshire Dementia Portal:
www.warwickshire.gov.uk/dementia