Council information brokers could help technology to play vital role in dementia care

By Martin Knapp and James Barlow

There’s no shortage of gadgets. But users and carers require help to make the most of what is available. Industry also should focus more on understanding what people really need from assisted living technologies, argues a new PIRU report.

In 25 years’ time, when many of today’s middle-aged population can expect to be living with dementia, technology will play a big part in their care. It will help them to stay in their homes longer and to avoid being institutionalized. It will also support their carers.

But right now, this isn’t happening enough, even though there is no shortage of gadgets developed by industry. “Why is this?” we ask in our report entitled “The Case for Investment in Technology to Manage the Global Costs of Dementia”. What can be done to accelerate the adoption of assisted living technologies, given the high levels of need among those who have dementia, the stress and isolation of their carers, and the urgency with which the cash-strapped health and social care systems need to control demand for costly treatment and support?

Slow adoption is partly explained by the particular characteristics of those whom we expect eventually to adopt these technologies – people with dementia themselves, their carers – and the local authorities and NHS bodies that might facilitate change. More on these issues in a moment.

Supply-side industry issues
However, responsibility also sits with those who develop the technologies. Research programmes which have looked into the use of assisted living devices continue to find that industry fails to optimise the user interfaces of technology, whether for health and care professionals or the general public.

That said, industry ought not to take all of the blame. It does, given the right circumstances, create and sell low-cost, user-friendly health-related technologies such as Fitbits, which many older people feel comfortable adopting. And most older people have mobile phones. So why doesn’t the large but niche market for people living with dementia show a similar level of growth and development?

Partly, it is because industry has not been as sensitive to this market as it has been to more able-bodied and -minded consumers. It can produce some really helpful, easy-to-use innovations, such as weight-sensitive mats that tell carers remotely whether someone has got out of bed and is walking about. However, as far as more sophisticated devices are concerned, research shows that suppliers often still tend to blame users when technology doesn’t work well. They should instead ask themselves more searching questions that would identify often simple design difficulties in their products.

Suppliers are not necessarily fully cognisant of the need to match technology to the sensory and tactile skills that older people have. Major companies are sometimes naïve about both the basics of what ageing means for individual abilities and the markets for a product. Developers in the ICT industry are still seduced by bigger, more obvious markets in which less trouble has to be taken in show people how to use the technology.

Despite all the effort put into user-led design, there is also still a big gap between research and development and engaging users to ensure that products are right from the outset. There are also plenty of examples where researchers and companies appear to develop a solution that’s in search of a problem.

Lack of support for users and carers
Nevertheless, despite these supply-side concerns, perhaps the biggest issues with regard to dementia care and assisted living technologies are on the consumer or demand side. We can’t be scientific, but perhaps about 80 per cent of the challenge is human, organisational and funding, compared with 20 per cent of the problem being about developing the technologies in the first place.

Funding issues are acute in the UK, where, like in most countries, the health and social care systems are fragmented. That means the costs and benefits of assisted living technologies fall into different silos, which can block take-up of innovations.

From previous research we reckon that an eighth of the costs of dementia care fall on the NHS, a quarter on social care services and the rest on informal carers. As a result, it is sometimes difficult to persuade one system to fund technology when the cost savings might accrue elsewhere. This sharing of cost is particularly difficult in the UK because social care is means-tested while healthcare is not.

An underlying issue, which our report also highlights, is that these technologies can be challenging for everyone, but particularly for older people, many of whom are not competent or confident with what for them are new technologies. That is particularly true for people with cognitive difficulties arising through dementia.

Carers will generally not have the cognition issues – although many carers are quite old themselves, and may have their own health issues – but they may not be familiar enough with the technologies to take on new challenges and tasks within the care setting. Older carers in particular might not have spent much of their working lives using ICT. They may perceive broadband to be expensive, even though the actual cost is not particularly high.

People need reliable advice and support
Often advice and support that’s available from the local authority is neither confident nor competent. The Care Act 2014 requires support for carers, but this duty has coincided with a sharp reduction in social care funding and availability, so that implementation has not matched the ambition.

Our report finds that local authorities are not good at sign-posting technologies to carers or at providing other associated supports. This concerns not just the monetary costs of purchasing technology but the costs of learning new skills. Such help would require fresh investment by councils.

However, this support could be vital to carers who need sound advice around technologies that they themselves might buy. They are not alone in being in the dark: a whole range of people in the system – including commissioners and care homes – lack knowledge about what is available, and what it might achieve.

That is why we argue that the public sector should take on an information broker role, offering a source of unbiased advice on assisted living technologies. A council might even use its purchasing power to negotiate attractive deals with suppliers, so that people feel assured that they are buying the right product at the best possible price.

There are examples of healthcare professionals – including dentists, GPs and pharmacists – providing this kind of advice to vulnerable patients and carers, even if their own service cannot foot the actual bill. The Third Sector has also long provided important consumer support, going right back to the founding of the Consumers’ Association. Some of the charities that support older people are well-positioned to take on such a role.

It may well be that industry – keen to expand its own markets – has a part to play in easing this problem. It should consider how it can support delivery of unbiased information and support. Carers and patients need all the assisted living help that they can get. They can’t wait for another 25 years.

Martin Knapp is Professor of Social Policy, Director of the Personal Social Services Research Unit at the LSE, and Director of the NIHR School for Social Care Research.

James Barlow is Professor of Technology and Innovation Management (Healthcare) at Imperial College Business School.

Both authors are members of the Department of Health’s Policy Innovation Research Unit (PIRU). Their report, written with several other colleagues, “The Case for Investment in Technology to Manage the Global Costs of Dementia”, is published by PIRU.