Developed using lived experience and extensive research, the platform is said to ‘fill a gap in user-friendly online support’, with ‘a highly personalised and empowering approach’.
DementiaNet explained: “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 the dementia journey by two of its three co-founders, Brian Schur and Hugh McGouran – both of whom have witnessed first-hand ‘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 sent away.”
Hugh, Chair of a dementia charity in the north-east, said: “There’s an overwhelming amount of information out there, but 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 not relevant to you at that point. This makes the search for information very upsetting, triggering, and often unproductive.”
He continued: “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.”
DementiaNet offers a digital vault for securely storing personal information, care plans and important documents, alongside step-by-step guidance tailored to the user – whether they have a diagnosis, suspect dementia, or are caring for someone else. The platform’s accessibility tools cater to users with visual impairments, ADHD and other needs.
Available free of charge with optional paid features for the secure planner and document store, DementiaNet adapts to users’ specific situations.
In addition to planning and legal tools, DementiaNet’s creators are hoping to tackle the emotional and social isolation many people experience, with an online forum, while
a built-in search tool connects users with relevant activities in their local area, which dementia support groups can use to add their event to. This also has further development plans.
Research shows ‘widespread frustration and dissatisfaction’ with online dementia resources, DementiaNet maintains. A 2024 DementiaNet survey found 88% of respondents felt unhappy or unsatisfied with existing general dementia-related information, with 36% ‘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, with the NHS estimating that 1 in 3 people will care for someone with dementia at some point in their lives.