Dementia Centred

By Grant Gibson

June 6th, 2018

How do people living with dementia make assistive technology work for them?

Technology is increasingly being seen as a tool to help people living with dementia.  A wide variety of devices are currently available, either through what are often called ‘technology enabled care services’ provided either through the NHS or social care agencies and include ‘telecare’; devices such as pendant alarms alongside movement or pressure sensors, which can indicate an emergency, such as if a person has a fall, and can summon assistance.    There has perhaps unsurprisingly therefore been a lot of consideration over the last 10 years about how telecare technologies can be used to improve the care of people living with dementia.

A range of other technologies are also available which can help people with dementia to carry on with their everyday activities, or to help them stay at home.  Such technologies include a number of everyday household devices which can be purchased from the high street or through online stores which sell assistive products.  Smart home technologies, which are becoming more and more popular can also be used in new ways to support a person with dementia.  For example, a voice recognition system such as Amazon’s Echo speakers using their ‘Alexa’ voice recognition technology will never get frustrated or annoyed with a person if can’t remember the time and need to ask repeatedly.  Unsurprisingly then, technologies such as Alexa are receiving attention about how they might help older people or people with dementia, either by providing prompts and reminders, or acting to help reduce loneliness (e.g.  BBC or Daily Caring). Finally, many of the technologies underlying some care technologies, such as GPS’s are now commonplace, found in most smartphones, meaning many general technologies many of us use on a daily basis can also be used to help support care.

Technology use in dementia care is growing, and is arguably becoming relatively widespread.  For example a recent report by the Scottish Government suggest that 1 in 5 people over the age of 75 in Scotland is currently in receipt of a telecare service package (Scottish Government 2018).  However there is also a significant amount of evidence to suggest that in practice the adoption of these technologies by people with dementia is lower than is often assumed, while many such telecare services may quickly become abandoned by those using them.  Indeed Greenhalgh et al (2016) have described telecare as a prime example of non-adoption.   

In a recent study, carried out by academics now based at the University of Stirling, Newcastle and Northumbria and due to be reported in the journal ‘Ageing and Society’ in the coming months, we wanted to explore how people with dementia actually use technology in their everyday lives, and what factors contributed either to their successful use, or to their being abandoned (Gibson in press).  We found that a key feature of technologies was their ability to be creatively adapted or changed according to the needs of a person with dementia; what we and other researchers such as Greenhalgh et al (2013) have called ‘Bricolage’. Many of these adaptations could be incredibly simple, and included using post it notes on devices to provide simple instructions, or covering certain controls of devices with tape.  Others used technologies such as CCTV or Webcams to create their own, bespoke versions of telecare, but in this case which enabled carers to watch over the person they cared for using their smartphones.  Where carers did this, it was generally because they either did not know that they could access similar telecare systems through their local authorities, or because they preferred their own version to those offered to them.

Putting such arrangements in place usually required a carer, usually a husband or adult child, to identify suitable technologies for the person they looked after.  This role also involved finding ways to make sure a person with dementia could use them as intended, adapting either the devices themselves, or how they might be adapted so that a person could use them.  In addition, the carer, or what we in this case call the ‘bricoleur’ also needed to think about how devices could be adapted as a person’s abilities declined.  Examples of adapting such technologies included using tape to cover up TV remote controls, so that only certain buttons could be seen, or buying simpler versions of existing devices. 

We also found that in general, carers felt that they frequently had little support when making these selfsame technologies work for them.  While carers usually knew the person they cared for the best, they often did not know about the range of technologies available, and in some cases did not know how the cognitive changes occurring in dementia might result in difficulties for the person, in some cases even blaming the person with dementia for being ‘lazy’.   Exacerbating these difficulties, most of the people with these problems received little support from telecare or technology enabled care services.  Even among those receiving formal telecare services, their experience was of technologies being ‘dropped in’ to their homes and lives, with little information about how they worked or who they could speak to if they needed help.  As a result, either due to people with dementia having problems using technologies as their dementia advanced, because technologies were unsuitable in the first place, or because they were provided too late for a person to learn how to use them, a number of these devices ended up being abandoned.

Our research therefore argues that technology services for people with dementia need to have a greater degree of personalisation in how they operate.  This personalisation will involve identifying both what a person with dementia needs (e.g. to keep them safe), but also what they may want.  Despite the focus of telecare on safety, many people want technologies which make daily activities easier for them, or devices which can help them continue with much loved hobbies or pastimes, or keep in touch with friends and family.  A personalised approach to technology enabled care also needs to identify how needs and wants may change over time, for example as a person’s dementia progresses, and provide guidance and advice about how to use devices as these needs change.  Such goals may fall outside the remit of traditional technology enabled care services, but such services can act as signposting services, pointing people towards devices available commercially which may be able to help them.  Such services are in short supply, but do exist. Examples of services providing such information include Unforgettable; a commercial online store selling a range of dementia friendly technologies (www.unforgettable.org), AT Dementia, a resource about assistive technologies available for dementia (www.atdementia.org.uk), or Dementia Circle, a project ran by Alzheimer’s Scotland, which provides personalised guidance regarding everyday technologies and how they can be used to help people living with dementia.  A number of these technologies, including smart phones, and smart home technologies can also be found in the Design and Technology Suite in the Iris Murdoch Building (home of the Dementia Services Development Centre) at the University of Stirling.

So having identified some of the issues which affect how people with dementia and their carers make use of technologies, what lessons can we learn?  A key feature of assistive technology and technology enabled care services relates to their ability to be personalised.  This involved providing technologies, signposting to other services or devices which may be available to buy commercially, and to provide guidance about how people can make technologies fit within their own, individual lives.  We are currently working with partners across Scotland and further afield to explore how such services might be developed in the future.

 

References

Gibson, G., Dickinson, C., Brittain, K., Robinson, L. (2018 in press)  Innovation, personalisation and bricolage, how people living with dementia make assistive technology work for them.  Ageing and Society In press.

Greenhalgh, T., Wherton, J., Sugarhood, P., Hinder, S., Procter, R. and Stones, R. 2013. What matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare Social Science and Medicine 93, 86-94.

Greenhalgh, T., Shaw, S., Wherton, J., Hughes, G., Lynch, J., A’Court, C., Hinder, S., Fahy, N., Byrne, E., Finlayson, A., Sorell, T., Procter, R. and Stones, R. 2016. SCALS: a fourth generation study of assisted living technologies in their organisational, social, political and policy context BMJ Open 6, 2.

Scottish Government (2018)  Technology enabled care: data review and evaluation options study: summary report Edinburgh: Scottish Government