Last week marked Carers Week and the launch of a new web platform, dementianet.com, created to support people living with dementia and those who care for them.
Developed using lived experience and extensive research, the platform fills a gap in user-friendly online support, with a highly personalised and empowering approach.
As local support services continue to decline thanks to cash-strapped council cutbacks – and in a rapidly evolving digital landscape – researching this distressing subject online is becoming more and more essential.
DementiaNet is heavily focused on simplicity and clarity, to minimise the triggers and overwhelm of searching for information to get affairs in order.
It also offers a secure digital vault, downloadable planning tools and a step-by-step dashboard to help people tackle things like a care plan – one manageable task at a time.
DementiaNet was created following direct, personal experience of two of its three co-founders, Brian Schur and Hugh McGouran. Both have witnessed firsthand the challenges that come with navigating the overwhelming information and practical tasks involved.
Brian struggled when his mother-in-law was diagnosed in 2022: “Just finding out what to do was impossible,” he said. “I’ve worked in the digital world for more than 30 years and despite being savvy online, I still found it a nightmare to do.
“We were given two leaflets from the GP and basically were sent away.”
Hugh, who is chair of a dementia charity, said: “There’s an overwhelming amount of information out there, however, much of it is generic and it’s hard to navigate without being sent down a rabbit hole of links, which lead to hundreds of other results that are not relevant to you at that point.
“This makes the search for information upsetting and often unproductive.
“People become immobilised in this situation, many of whom are already highly stressed and frightened, whether they are looking for themselves or someone they care for,” he said.
“DementiaNet is uniquely designed to offer a more tailored experience; relevant information to help people at the earliest point of their journey to achieve the best sense of control they can – that’s been missing for far too long.”
The platform’s accessibility tools cater to users with visual impairments, ADHD and other needs.
With its planner, document store and unique user design, it adapts to users’ specific situations — whether they’re worried about symptoms, have just received a diagnosis, or are supporting someone with dementia.
As the platform grows, it will expand to serve more groups, such as younger carers.
In addition to planning and legal tools, the creators are also hoping to tackle the emotional and social isolation many people experience, with an online forum: “We know online communities can be saviours to people in shared experiences, so we’ve built a live conversation area for people to ask questions and help each other,” said Hugh.
“Our aim is to build that community over time, so there’s always somewhere people can go to share and support each other, day or night.”
A built-in search tool also connects users with relevant activities in their local area, which dementia support groups can use to add their event or gathering to.
“Our objective is for DementiaNet to be a calm, informative place where people can find answers as easily as possible,” Hugh adds.
Research shows widespread frustration and dissatisfaction with online dementia resources.
A 2024 DementiaNet survey found that 88% of respondents felt unhappy or unsatisfied with existing general dementia-related information and 36% were dissatisfied with government support information.
Fewer than one in three felt “fairly satisfied” with the help they found.
The number of people living with dementia in the UK is expected to rise to 1.4 million by 2040, and with the NHS estimating that 1 in 3 people will care for someone with dementia at some point in their lives.
The aim is to grow and develop DementiaNet to be the place people can go to get everything they need to manage life with dementia.
Visit dementianet.com for more information.
South West Durham News covering news across County Durham.
