International co-design study focuses on supporting people after a diagnosis of dementia when people can feel overwhelmed

This post is written by Greta Rait (Clinical Professor of Primary Care and Health Services Research) and Jane Wilcock (Senior Research Fellow) who have played a lead role in an international collaboration aimed at supporting people after a diagnosis of dementia.

By 2050, the World Health Organisation has estimated that 139 million people world-wide will have dementia. There is currently no treatment for the disease and no cure. We know that people living with dementia and those who care for them often have negative experiences of the dementia diagnostic process.

People tell us that they receive insufficient information after a dementia diagnosis, there is a pervasive view that little can be done and that you are given are a diagnosis and told to go to home and get on with it. This has been exacerbated by pandemic restrictions on services and community-based supports.

Most dementia post-diagnostic support does not consider quality of life and is reactive and not proactive, it is also very patchy in terms of provision at an international and national level. Health care professionals can find communication of a dementia diagnosis difficult. They can find it tricky to get supports and care packages in place. They report variations in service availability and a lack of integration of services.

What was our approach?

We are part of an international consortium led by the University of New South Wales with colleagues in Canada, The Netherlands and Poland partnering with people living with dementia, those who care for them and healthcare professionals to improve dementia support.

The UK team (Greta Rait, Jane Wilcock at UCL and Louise Robinson and Marie Poole at Newcastle University) undertook a review and thematic analysis of global National dementia strategies and guidelines and public health campaigns.  It became clear from this review and workshop discussions with our partners that there were multiple areas requiring attention but for this ambitious study we wanted to focus on doing one thing and one thing well. From this it became clear that we would focus on the need for support during the first 12 months post diagnosis.

Our work highlighted:

• the uncertainty following a diagnosis about what the future holds and who can help
• how accessing good support at the right time is key to living positively with dementia
• concerns among healthcare professionals that they don’t always know enough about dementia, or the organisations and services that can offer practical or emotional support
• ongoing issues during the Covid-19 pandemic with finding and providing good dementia support

Through an iterative and collaborative process of co-design workshops and user testing refinement we have developed Forward with Dementia  a website and personalised toolkit to help people with dementia, their families, and professionals providing support, to access the right information and support at the right time. For free and on any device. Each partner country has translated and culturally adapted the intervention to their own regions. The site is available in Polish, Dutch and French Canadian.

How Forward with Dementia can help?

The online guide brings together practical advice, personal experiences from people with dementia and those who care for them, and topical news stories.  You can find information on key issues: Hearing (and giving) a diagnosis; Coming to terms with dementia; Managing symptoms and changes; Supporting health and wellbeing; and Making plans and decisions.  The site is designed to simplify navigation, ensure accessibility, and written in a friendly non-scientific language either for a person with dementia, family carer or healthcare professional.

A personalised toolkit lets people choose and save information that is relevant to them and create actions to take positive steps to living life with dementia,  without having to remember a password and log-in name.  The toolkit can be shared with others such as family, friends, professionals though sharing a unique URL.

Bill has been part of the UK co-design group.  He cares for his wife Jo and is a passionate advocate of improving understanding of dementia and living positively. As well as being involved in the development of the guide, Bill continues to use it for support as their circumstances change:

“My wife Jo was given her diagnosis during lockdown and I, like many others had no experience of what to do next. Who do I turn to? What help is available? Where can I find out everything I need to know? The realisation that I didn’t know what I didn’t know was overwhelming. now. If only Forward with Dementia had been around then my life would have been so much easier. As the research and website developed so, sadly, did Jo’s journey. I was able to contribute from real time life experience and also gain insights from others into both my journey and Jo’s, all at the right time for me. I have and will continue to use this resource as a valuable part of my dementia toolkit.”

Join us to find out more

We are trying to reach out to as many people as possible who would benefit from accessing Forward with Dementia.

• You can explore the site and create a toolkit
• Share the guide with family and friends
• Consider using this with patients or clients to start difficult conversations
• Help us with our evaluation and to improve the site by completing the short website survey via the homepage or reach out and speak to us. We would love to hear your feedback.
• You can request our leaflets and posters to help raise awareness

Follow us on social media for regular updates and information about promotional events.

Facebook: @ForwardDementiaGB

Twitter: @ForwardDementia

Instagram: forwardwithdementia_gb

YouTube: Forward with dementia International

What next? 

We have been awarded a research grant from the NIHR Three Schools’ Dementia Research Programme to produce and deliver a tailored supportive guide to social care after a diagnosis of dementia.

Jane will lead on this research across the NIHR Schools of Primary Care, Public Health and Social Care Research partnering with colleagues at Newcastle University and King’s College NIHR Policy Research Unit in Health and Social Care Workforce.

Further Information

For further information about Forward with Dementia, or to request resources such as leaflets or posters contact Jane Wilcock at j.wilcock@ucl.ac.uk

Forward with Dementia in the UK are funded by the Alzheimer’s Society.

Thank you to the UCL Research Department of Primary Care and Population Health for their permission to report this blog. You can view all of UCL'S Primary Care Blogs at: https://blogs.ucl.ac.uk/pcph-blog/