With an estimated annual cost to society of £26 billion (Prince et al., 2014), dementia presents one of the many challenges to an already stretched health and social care system (Hutchings et al., 2018). The impact on people living with dementia, and their families and carers, is obviously immense.
In response to this, a number of initiatives have developed including the Prime Minister’s challenge on dementia 2020 (Department of Health, 2015), aimed at expanding our capacity in terms of ideas, workforce and evidence in dementia care. As a society, we are searching for ways to better support the increasing number of people who will be affected by dementia.
One topic that attracts interest is the use of assistive technology (sometimes described as ‘electronic’ or ‘intelligent’ assistive technology) to support people with dementia to live more independently and, ideally, with improved quality of life. This technology may also provide a means of reducing the financial impacts facing individuals, families and society – if the technology proves to be cost-effective.
As the cost of electronic devices has dropped dramatically and we become accustomed to technology being entwined in our lives, providing a huge range of readily-at-hand assistance, it is perhaps too easy and too tempting to take for granted the idea that the future of dementia support is electronic. However, evidence from the Whole System Demonstrator trial of telehealth and telecare systems suggested that the picture concerning the use of such technology is more complex than we might think based on our everyday experiences of technology (Newman et al., accessed 2018). For example, when applied to people with a range of long-term conditions, telehealth systems were not seen to be a cost-effective addition to usual care (Henderson et al. 2013). We need, then, to tread very carefully and precisely in understanding how well electronic technology may help people living with dementia.
Two research papers, one by Van der Roest and colleagues (2017) and another by Ienca and colleagues (2017) provide, in different ways, a very helpful overview of the current level of knowledge and research evidence with regard to using assistive technologies for people living with dementia.
Van der Roest and colleagues (2017) undertook a Cochrane systematic review of the evidence on how well assistive electronic technology for memory support helps people living with dementia- in terms of assisting them to perform activities of daily living (such as personal care, shopping, keeping appointments, or taking medication), managing levels of dependency, and impact on admission to care homes. For examples, the technology might provide a person with automated reminders of significant events or activities. This type of review of the literature is a recognised, transparent and rigorous process for drawing together evidence on a topic (Chapman, 2014). The authors provide details of the work they undertook for the review to give a high degree of confidence that they have been comprehensive in the primary research they have included in the review.
Van der Roest and colleagues (2017) searched for studies reporting randomized controlled trials or ‘RCTs’ (RCTs are the most robust research method for evaluating the effectiveness of an intervention compared to another form of providing care), which considered the impact of electronic assistive technology in supporting memory function in people diagnosed with dementia.
They were unable to find any studies meeting their criteria to include in the review, leading them to conclude “there is no high-quality evidence to determine whether [Assistive Electronic Technology] is an effective means of supporting people with dementia manage their memory problems.” This is not to claim that all electronic technology is useless for helping people with dementia. It means that in understanding technology’s role in specifically helping with memory function, we have no robust evidence to guide our decisions.
If we are to address the gaps in our evidence with regards to using electronic technology in the context of dementia care, we need to be very precise about our understanding of the technology, who it is being used to help and in what ways. Ienca and colleagues (2017) undertook to examine published research in this area to provide, what they call, an “index of intelligent assistive technologies (IATs)” for people living with dementia. Their overall goal was not to assess the effectiveness of these technologies, but to provide a framework to help us be more focused in our understanding of what technologies there are. They also undertook a robust and transparent process in searching for and reviewing the literature, which they have clearly set out. Obviously when setting out to produce a list of items, the categories used will be important; Ienca and colleagues are clear about the ones they use to produce their index of technologies.
They found literature on 539 IATs aimed at the context of dementia care! The number of technologies has increased six times when comparing the periods 2000-5 to 2006-10. Ienca and colleagues index these against broad types of technology, such as whether they are distributed systems, mobility and rehabilitation aids, or robots. They then describe the technologies and what they are for. For example, many of this latter group of robots were aimed at helping people to complete tasks, but 31 were aimed at helping people with social and emotional needs (socially assistive robots).
The highest number (n = 148) of the technologies were designed to help users to complete activities of daily living, while others were for monitoring users and their environment (n = 100), or providing physical (n = 88) or cognitive assistance (n = 85). Wearable devices (n=44) were a modest number of the total, perhaps reflecting fairly recent development of this area of intelligent technology in general life. Thirty-one of the IATs were aimed at supporting people with emotional and affective disruptions, while only 9 were directly aimed at providing assistance to the social dimension by reducing isolation and facilitating social interaction.
As you can imagine, given the total number of technologies the authors uncovered, there is much more detail in their index and too much to discuss here. A full reading of the paper will show what technologies are available and the gaps in provision.
The authors were also interested in whether technologies had been produced in collaboration with end users, and argue that involving the intended users in the design process would make it more likely that target audiences would adopt these technologies. They talk of cooperative design and participatory design, ideas that seem to parallel the idea of co-production, which is more widely discussed in social care. Ienca and colleagues found that of the technologies they identified, only 40 per cent were designed with representatives of the target audiences. The authors, however, do predict that collaborative approaches to design of technology will be the norm in the near future.
The final point I want to discuss from the paper by Ienca and colleagues is their assessment of the evaluations of the 539 IATs they review. They found that roughly half of the technology did not receive any kind of evaluation involving human users, and most that did (254 of the 266) were conducted with small samples of people (i.e. fewer than 20 people). Randomized controlled designs of the evaluations were reported in only 1.1% – that is, in only 3 studies. This brings us back to the findings of Van der Roest and colleagues: we are a long way from having robust evidence about the impact of these intelligent assistive technologies in the context of dementia care.
The diversity covered by the term ‘technology’ is huge. This was recently brought home to me in a discussion with colleagues from the NHS, when we were discussing whether or not research in to technology was a priority compared to other topics. I was not so enthusiastic about it, but they were. As the conversation progressed, it transpired that we each understood technology to mean completely different things; I was thinking of assistive technology, but they were very enthused about artificial intelligence, for example, to diagnose conditions and search case notes for people who are likely to have rare illnesses. There is much scope for confusion, misunderstanding and uncertainty when discussing ‘technology’ in social and health care. This type of contribution of Ienca and colleagues, which helps to make the landscape of this area in dementia care much more structured and clear to assist our deliberations, is very welcome.
Technology is a very rapidly developing area, as is evident when you watch a film or television show set around 10 years ago and the characters pull out their mobile phones – often those old flip phones. Since then we have become used to having powerful little computers in the palms of our hands, almost permanent connection to the internet where ever we are, devices about us that constantly monitor our activity, voice control and connected household devices we can remotely control. The promise of devices becoming more intelligent in how they respond to us and independently operating does not seem fanciful. Of course there is going to be potential among these developments for technology to play a significant role in helping people living with dementia, their families and carers. However, we need to avoid being seduced by glitzy promises, our everyday experiences and naïve assumptions before we commit substantial social investments in using these technologies to help with the care of people with dementia, and other care needs. Recent work by Woolham and colleagues has shown that not only do we need to be very attentive to how the technology is developed, but also to the wider organisational systems that support its deployment, and how we respond and maintain it (see UTOPIA study website). Woolham found huge variation in how English local authorities are currently doing all this with the technology we use for telecare. Reading this research, I could not have confidence that we have strong systems across the country for using any technology that is developed.
As the authors of both the papers discussed here note, this is a complex topic with very challenging methodological issues to address if we are to improve the evidence base. But the challenges are addressable. There is a great deal of promise in how technology may help us to address the individual, family and societal challenges presented by dementia and other conditions; we just need to tread carefully to be sure that we do not waste social resources and/or create undesirable outcomes from its use. We need better ways of co-designing technologies so that they are more likely to be adopted; followed by more robust evaluations of the impact of these to understand what works, for whom and how. This evidence, which can be helpfully tracked and communicated by the Social Care Elf, should then be used to guide improvements to local systems to deploy these technologies to more cost effective use.
Further resources about dementia can be found here: https://www.scie.org.uk/dementia/
Conflicts of interest
Ienca M, Fabrice J, Elger B, et al. (2017). Intelligent assistive technology for Alzheimer’s disease and other dementias: a systematic review. Journal of Alzheimer’s Disease 56(4) 1301-1340. [PubMed abstract]
Van der Roest HG, Wenborn J, Pastink C, Dröes RM, Orrell M (2017) Assistive technology for memory support in dementia (PDF). Cochrane Database of Systematic Reviews 2017 Issue 6. Art. No.: CD009627. DOI: 10.1002/14651858.CD009627.pub2.
Chapman S (2014). What are Cochrane Reviews? Evidently Cochrane website, accessed 31 Jul 2018.
Henderson C, Knapp M, Fernández J-L, et al. (2013). Cost effectiveness of telehealth for patients with long term conditions (Whole Systems Demonstrator telehealth questionnaire study): nested economic evaluation in a pragmatic, cluster randomised controlled trial. BMJ 346:f1035.
Hutchings R, Carter D, Bennett K (2018). Dementia – the true cost: Fixing the care crisis (PDF). Alzheimer’s Society, May 2018.
Department of Health (2015). The Prime Minister’s challenge on dementia 2020 (PDF). London: Department of Health.
Prince M, Knapp M, Guerchet M, et al. (2014). Dementia UK: Update Second edition (PDF). Alzheimer’s Society, Nov 2014.
Newman SP, Bardsley M, Barlow J, et al. The Whole System Demonstrator Programme (PDF), City University website, accessed 15 Aug 2018.
Using Telecare for Older People In Adult social care (UTOPIA) webpage, King’s College London website, accessed 31 Jul 2018.