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One of the goals of the current ‘Coventry and Warwickshire Living well with dementia’, which campaign launched in October 2012, is to raise awareness and reduce stigma about dementia.

We all have different levels of knowledge about what dementia is and it means different things to each of us. People living with dementia are sometimes thought as those requiring high-levels of formal care, struggling to remember where they are, to recognise those around them and to engage in their own life or their future. In fact, this common perception fails to recognise that many people with dementia, especially those in the earlier stages, may still be working, doing voluntary work, starting new activities, learning new skills, actively engaging in the community and learning new ways to manage their illness.

‘’I believe that an important reason patients go downhill the way they usually do is because society sends them a devastating message that their lives are already over.’  – Morris Friedell: Dementia Advocacy and Support Network International (DASNI).

My name is Dr Emmie Fulton, I am a Health Psychologist and I work for Coventry University and Public Health NHS Warwickshire. I Recently began working on projects to support people following a diagnosis of dementia. I soon realised how little I knew. Like many people, the image I had of a person with dementia was really that of someone in the late stages of the illness, and I had no idea about the very different ways that the illness can affect people. What struck me more than anything else was the fact that the majority of support and information available is aimed at carers and those supporting people with dementia. Although I recognised the great importance of this, I couldn’t help but wonder why there was so little written and provided for a person with dementia themselves. This only seemed to reinforce the mistake that society can make that a person with dementia is no longer able to be actively involved in their health, their future, their life.

If the expectation is that you will not be able to learn new hobbies, do things for yourself, and take control of your own health, is it any wonder that some people with dementia feel hopeless and become depressed and withdrawn? The purpose of ‘Coventry and Warwickshire’s Living Well with Dementia’ campaign is to challenge these views and to promote the message that with help and support, people can live well with dementia. As part of this campaign, an information portal for dementia has been developed that aims to provide comprehensive information to people with dementia, their carers and the wider public about dementia. Linked to this we plan on developing additional web-pages written especially for people with dementia in the early stages and we are interested in hearing your thoughts about this.Recent Government reports tell us that they are committed to ensuring people receive a diagnosis of dementia as early as possible. This enables people to access information and support in a timely manner. The aim of the additional web-pages is to provide a positive message about what people can do for their physical and mental well-being, to help them to live well with dementia.

“We need to focus on ….. daring to try to recover skills, develop new talents, and create a new future invested with meaning and hope”. – Christine Bryden, in her book: ‘Dancing with Dementia’

We need your help to develop the webpages and are asking for your ideas about what would be useful content for the web-pages. It could contain practical tips and strategies to help people to remain independent, cope with stress and low mood, engage with others socially or learn new skills.

“You can’t stop the waves, but you can learn to surf”  – Jon Kabat-Zinn, 2004

Information about what dementia is and sign-posting to local services and support is well provided for by the Alzheimer’s Society and the new Coventry and Warwickshire Living Well with Dementia Portal. Therefore, the webpages will not focus on this specifically; however it will link to these sources. We realise that many people with dementia do not use the internet and may prefer not to receive support in this way. However we are aiming to provide people with a range of options in terms of how they access information and hope that as society ages, those receiving a diagnosis will be more familiar with the internet, and therefore this method of support will become more and more relevant to people. We welcome all ideas and thoughts. The most important thing for us is that it will provide something hopeful and useful to people living with dementia.

Please help us to develop the webpages by completing this short online questionnaire. Simply click on the link below and you can complete the questions:

http://www.surveymonkey.com/s/145dementia897

We will use this important information to help us to develop the content and tools offered. All ideas and comments will remain anonymous and confidential.

Thank you for your help. If you have any questions, please contact Dr Emmie Fulton (Project lead) on 02476 887171 or emmie.fulton@coventry.ac.uk

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