By 2050, the World Health Organization* has estimated that 139 million people world-wide will have dementia.
Although there are treatments and therapies to help with dementia symptoms, there is currently no cure.
Now, as part of an international partnership, Newcastle University has helped develop a web-based guide and personalised toolkit to support people after diagnosis and allow them to move Forward with dementia.
Impact of dementia
Dementia is the broad term for a number of degenerative neurological conditions – there are around 200 subtypes, with Alzheimer’s disease being the most common.
Causing symptoms including memory loss, confusion, and problems with understanding and speech, it has a profound impact on the lives of people affected by dementia and their families.
Although dementia typically affects older people, young onset dementia – before the age of 65 – accounts for up to 9% of cases worldwide.
Dementia is the seventh leading cause of death and one of the major causes of disability and dependency among older people globally*.
Improving support after diagnosis
As a global leader in ageing research, Newcastle University is a partner in the multi-organisation COGNISANCE research programme which is working to improve post-diagnostic support.
Involving teams from Australia, Canada, the Netherlands, Poland and the UK, the programme has been working in partnership with people with dementia, their families and healthcare professionals to understand the experience of a dementia diagnosis.
It has 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
Newcastle University researcher Professor Dame Louise Robinson said: ‘There are lots of organisations and services who that can help people with dementia and their families. However, people often don’t know what help is available, what is right for them and how to get it.
‘People often wait until they are at a crisis point before they ask for help. They might be worried about the cost of care, or think support is only for people who have advanced dementia.
‘Getting appropriate information and support in place as soon possible after diagnosis can help the person and their family get the most out of life and prepare for their future with dementia.’
Forward with dementia
To support people after a diagnosis, COGNISANCE has developed an internationally adaptable web-based guide with interactive toolkit Forward with dementia.
Bringing together practical advice and news stories, plus personal experiences from people with dementia and those who care for them, the site offers information on five key issues:
- hearing (and giving) a diagnosis
- coming to terms with dementia
- managing symptoms and changes
- supporting health and wellbeing
- making plans and decisions
Designed with brand consultancy Spencer du Bois, it can be accessed for free on any device and, because it doesn’t require a password or log-in, is simple to navigate – either for a person with dementia, family carer or healthcare professional.
The site provides healthcare practitioners with new tools and new ways of thinking to support people with the disease. And its personalised toolkit allows people to choose and save information that is relevant to them, creating actions to take positive steps to living with dementia.
UK toolkit
Forward with dementia’s UK resource was developed by Professor Robinson and Dr Marie Poole from Newcastle University, together with Professor Greta Rait and Jane Wilcock from University College London.
They worked with a co-design group who shared their experiences and frustrations about finding good dementia support – carers like Bill, whose wife, Jo, was diagnosed during lockdown.
He said: ‘Like many others, I had no experience of what to do next; who to turn to; what help was available; where I could find out everything I needed to know. It was overwhelming.
‘As the research and website developed so, sadly, did Jo’s journey. I was able to contribute from real life experience and gain insights from others into both my experience and Jo’s.
‘I have and will continue to use this resource as a valuable part of my dementia toolkit.’
What’s next?
UK work on the COGNISANCE programme and website has attracted funding support from The Alzheimer’s Society and a campaign is being rolled out in Newcastle, Bradford, Camden and Bournemouth.
Posters and leaflets – particularly in memory clinics and GP practices – will be used to reach as many people as possible who could benefit from accessing the web guide. Updates and event details will be promoted through social media at:
ForwardwithDementia-GB
@ForwardDementia
forwardwithdementia-gb
There are also opportunities to give feedback and get involved in the UK team’s research by signing up at forwardwithdementia@ucl.ac.uk
For further information about Forward with Dementia, contact Dr Marie Poole at marie.poole@newcastle.ac.uk.