Emerald Group Publishing Limited
Article Type: Guest editorial From: Journal of Assistive Technologies, Volume 8, Issue 4.
Peter Cudd and Gail Mountain
Dementia is one of the headline diseases of the twenty-first century. With no cure nor fully understood aetiology and increasing numbers of people diagnosed or believed to have dementia, there is an urgent almost global need to not only find treatments but also develop services and resources that can make care affordable (World Health Organization, 2012). Self-management is seen as a necessary health and social care strategy (Mountain and Craig, 2012). More efforts to develop assistive solutions for people with dementia are needed and welcome.
Researching effective solutions aiming at enablement and independence for people with dementia compared to many other groups can be considered as challenging (Hubbard et al., 2003; Murfield et al., 2011; Span et al., 2013; Cudd et al., 2013a). Maintaining ethics and consent can be difficult to achieve with thoroughness during a study (Murfield et al., 2011; Cubit, 2010), recruiting and keeping research study participants is often reported as problematic (Murfield et al., 2011; McKeown et al., 2010), while many initiatives that fund research and interventions to provide care and support for people with dementia seem to desire one-fit-all technologies (Cudd et al., 2013a). Fundamentally people living with dementia are highly diverse individuals – not only having the usual variations in lifestyle, life experience, co-morbidities, etc. of their age peers, they also have diagnoses across the syndrome that is labelled “dementia” with the concomitant variations in symptoms, and, are – at a detailed level at least – on a unique journey of disease and disablement progression. This presents challenges for assistive technology inventors and innovators (Cudd et al., 2013a; Greasley and Cudd, 2013); essentially because a designer – especially for software – will ask for extensive and specific user requirements. Consideration of variability in the target population usually therefore has to be part of those requirements – something that software perhaps can address more readily than other forms of technology.
Assistive technology should of course assist in delivering enablement and independence for people living with dementia. It will rarely be a panacea however; rather just being part of a range of services, interventions and solutions (Mountain, 2013). This Special Issue on assistive technology for people with dementia brings together a number of papers that use user centred approaches. They report contemporary examples of technology that address a small sample of various everyday life needs – use of information and communication technology, reminders on carrying out tasks, being safe and able to communicate with carers when out of the home, and, playing games (that are intended to be rehabilitative for cognitive abilities).
In a case study, Astell, Malone, Williams, Hwang, and Ellis present re-learning and acquiring new skills to use “mainstream” information and communication technology by one of the authors who is an individual with dementia. This suggests that in some, perhaps many, circumstances a lot could be done to enable people with dementia to continue or start their use of information and communication technologies. As such technology is increasingly necessary in life this has great promise for further investigation and benefits (continuing in a job and at home). Future research could develop services that would be employed in supporting people with dementia using mainstream technologies – and as a co-product undermine the perception that people with dementia cannot learn (Mountain, 2006).
In another case study paper by Nishiura, Inoue and Nihei they have used a robot to deliver daily living assistance – the ultimate and wider goal being to help with current and future shortfall in carers. The assistance examined here is in the form of verbal prompts. Their work in particular examines the important component of language and content of these prompts for three typical daily living tasks. Although it is clear that a lot more research is needed it does confirm that appropriate language for the individual with dementia is an important consideration (Greasley and Cudd, 2013) and again illustrates that people with dementia can learn and acquire skills.
In the paper by Magnusson, Sandman, Rosén and Hanson they examine extended safety and support services from the perspectives of some of the involved stakeholders, namely the people with dementia, the friends or family who also provide care and the frontline service providers. The extension in care comes from providing help outside the home through use of the global positioning system and mobile telecommunications. Cost effectiveness of deployed services is an important consideration for achieving service providers and societies goals (Bowes et al., 2013). Interestingly their cost analysis on delaying escalating level of care and locating people when they are missing demonstrates a cost-effective solution.
The paper by Merlampi, Sirkka, Leino, Koivisto and Finn evaluates the use of up-to-date tools and methods to cognitively rehabilitate people with dementia through them playing mobile games. While rehabilitation is intended the importance of the leisure component should not be underrated (Smith and Mountain, 2012). Some of the games were abandoned as too difficult. In the games that were played the people with dementia's ability to learn was yet again observed (the authors found a trend of improving game scores over time). However, the authors note that a traditional paper-based test to evaluate cognitive ability did not indicate improvements. Indeed their testing showed highly variable results for individuals over short time scales – suggesting that a single test evaluation could be highly misleading and should not be relied upon in future research.
A care provider planning to use these or any assistive technology has to consider the match to an individual's needs. But they also should explore and plan for the support needs (as with any intervention); and, this should anticipate that as the disease progresses the support needed will increase. Hence fundamentally whether a family, friend/neighbour or paid worker these people are key stakeholders and users as in the Magnusson et al. paper herein. Thus people who support the person or persons with dementia are very important for effective assistive technology and should ideally be involved as early as possible in any proposed new technology and any associated service (Cudd et al., 2013b). Their capabilities and roles significantly impact the design requirements and viability of solutions. Hence more publications covering this aspect thoroughly are highly desirable.
Bowes, A., Dawson, A. and Greasley-Adams, C. (2013), Literature Review: The Cost Effectiveness of Assistive Technology in Supporting People with Dementia, The Atlantic Philanthropies, Dementia Services Development Centre, University of Stirling, Stirling
Cubit, K. (2010), “Informed consent for research involving people with dementia: a grey area”, Contemporary Nurse, Vol. 34 No. 2, pp. 230-6
Cudd, P., Greasley, P., Gallant, Z., Bolton, E. and Mountain, G. (2013a), “How individual should digital AT user interfaces BE for people with dementia”, in Encarnação, P. (Ed.), Assistive Technology: From Research to Practice, Vol. 33, IOS Press, Amsterdam, pp. 602-9
Cudd, P., Bolton, E., Gallant, Z. and Greasley, P. (2013b), “The person living with dementia their carer and their digital technology”, in Encarnação, P. (Ed.), Assistive Technology: From Research to Practice, Vol. 33, IOS Press, Amsterdam, pp. 610-5
Greasley, P. and Cudd, P. (2013), “Language and communication in the dementias: implications for user interface design”, in Encarnação, P. (Ed.), Assistive Technology: From Research to Practice, Vol. 33, IOS Press, Amsterdam, pp. 616-21
Hubbard, G., Downs, M.G. and Tester, S. (2003), “Including older people with dementia in research: challenges and strategies”, Aging & Mental Health, Vol. 7 No. 5, pp. 351-62
McKeown, J., Clarke, A., Ingleton, C. and Repper, J. (2010), “Actively involving people with dementia in qualitative research”, Journal of Clinical Nursing, Vol. 19 Nos 13-14, pp. 1935-43
Mountain, G. (2013), “Using technology to support people with dementia”, in Sixsmith, A. and Gutman, G. (Eds), Technologies for Active Aging, Springer, New York, NY, pp. 105-21
Mountain, G.A. (2006), “Self-management for people with early dementia: an exploration of concepts and supporting evidence”, Dementia, Vol. 5 No. 3, pp. 429-46
Mountain, G.A. and Craig, C.L. (2012), “What should be in a self-management programme for people with early dementia?”, Aging & Mental Health, Vol. 16 No. 5, pp. 576-83
Murfield, J., Cooke, M., Moyle, W., Shum, D. and Harrison, S. (2011), “Conducting randomized controlled trials with older people with dementia in long-term care: challenges and lessons learnt”, International Journal of Nursing Practice, Vol. 17 No. 1, pp. 52-9
Smith, S.K. and Mountain, G.A. (2012), “New forms of information and communication technology (ICT) and the potential to facilitate social and leisure activity for people living with dementia”, International Journal of Computers in Healthcare, Vol. 1 No. 4, pp. 332-45
Span, M., Hettinga, M., Vernooij-Dassen, M., Eefsting, J. and Smits, C. (2013), “Involving people with dementia in the development of supportive IT applications: a systematic review”, Ageing Research Reviews, Vol. 12 No. 2, pp. 535-51
World Health Organization (2012), Dementia: A Public Health Priority, World Health Organization, Geneva