Making digital dementia-friendly
Gill Hitchcock reports on how government, councils and tech developers can remove the obstacles to digital inclusivity for people with dementia
This summer, a spotlight is shining on dementia as a disability. It aims to illuminate the way for people with the condition to assert their rights to equal treatment and to access services, including those online.
The switch was thrown in Westminster by MPs and peers in the all-party parliamentary group on dementia. In a landmark report, the group asserts that public authorities should consider the needs of people with dementia when they make decisions about the using technology.
Hidden No More: Dementia and Disability also challenges the technology industry to be inclusive in its design and manufacture of devices and remove obstacles, such as sequences, passwords and PINs, to people with dementia.
IT companies have a responsibility to make their services and products accessible, says Helen Milner, chief executive of leading digital inclusion charity The Good Things Foundation. She would also like a change in the law.
Despite the Equality Act 2010, which requires public bodies to consider the impact that changes in policy and services have on disabled people, those with dementia continue to experience discrimination that contravenes their human rights.
“There are laws that are very easily understood, for example around physical access to buildings,” says Milner. “Updating them to make it illegal to have virtual apps or services that are not accessible would be the right thing to do.”
She thinks the government’s Online Harms white paper is an opportunity for improvement too. It proposes a new duty of care to protect internet users, particularly children and other vulnerable groups. This will be overseen by an independent regulator.
Alongside regulating internet giants, the likes of Facebook and Google, Milner believes the new regulator should be responsible for enforcing equality legislation in online services.
The Alzheimer’s Society’s head of research development and evaluation, Colin Capper, recognises the digital exclusion highlighted by the all-party group. He wants to see collaboration across private, public and third sectors to design products in the right way for people with dementia, taking into account disease progression.
“There is very significant potential for technologies to improve the lives of people with dementia,” he says. “That potential goes from improving diagnosis right through to supporting people to live independently and later stage care. But there are significant challenges in driving those benefits.”
First, is a lack of dementia-specific standards against which devices are checked. Capper thinks government should ensure that NHS standards for the co-design of products account for different types of dementia. He believes government should support councils in designing standards to give specified outcomes.
“There are so many things on the market, it can be difficult for local authorities to be confident in these technologies,” he says. “So there is something about a single standard.”
Second, comes lack of awareness of products. Capper says health and social care staff do not necessarily have a good knowledge of digital products that can support people with dementia.
“The government has a role in ensuring the likes of Health Education England are thinking about the competence of their workforce in the use of digital technology; an important theme in the NHS Long Term Plan, he says.
“Local authorities must have the opportunity to educate their staff about the technologies that are on the market. In addition to the assessment process and review of care of people with dementia, we must put people in touch with available technologies and ensure they can be supported to access them.”
This is where The Good Things Foundation can come in. In one of its many local projects to promote digital access, it is working with digital support workers in Leeds who take equipment out to people with dementia.
“They show them things like Alexa, iPads and smartphones, just to raise awareness among people with dementia and their carers about how technology could help,” says Milner.
Capper says there are pockets of good practice and gives as examples two London councils. One is Barnet and its dementia support service, where assessments by occupational therapists cover how assistive technology can aid independence. Barnet also routinely works with PA Consulting to incorporate technologies, such as sensors, mobile devices and alarms, into everyday living.
The other is Croydon. For some 12 years, the council’s Aztec Centre has demonstrated and provided access to a wide range of assistive technologies. And it’s open to anyone.
“There are laws that are very easily understood, for example around physical access to buildings. Updating them to make it illegal to have virtual apps or services that are not accessible would be the right thing to do.”
Helen Milner, The Good Things Foundation
Meanwhile, virtual reality is already a useful tool in dementia care. For example, in reminiscence therapy where it can take people back to a place, or a set of memories, which can then be explored.
“Where VR has a further potential is staff training,” says Capper. “Through VR, you can immerse somebody in an experience that is similar to that of someone with dementia. It can be a very powerful way to promote empathy within the workforce.”
While there are about 850,000 people with dementia in the UK, the number is set to exceed a million by 2025. As the all-party group on dementia asserts, these people need adjustments to enable them to continue to participate in their communities, and ensure they are socially included.
For technology providers across all sectors, Capper has a clear message on inclusion: people with dementia want to be part of the digital design process. They want to be in at the start.
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