The provision of assistive technology products and services for people with dementia in the United Kingdom.

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The provision of assistive technology products and services for people with dementia in the United Kingdom

Dementia 0(0) 1–21 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214532643 dem.sagepub.com

Grant Gibson Institute of Health and Society, Newcastle University

Lisa Newton Institute of Health and Society, Newcastle University

Gary Pritchard Institute of Health and Society, Newcastle University

Tracy Finch Institute of Health and Society, Newcastle University

Katie Brittain Institute of Health and Society, Newcastle University

Louise Robinson Institute of Health and Society, Newcastle University

Abstract In this review we explore the provision of assistive technology products and services currently available for people with dementia within the United Kingdom. A scoping review of assistive technology products and services currently available highlighted 171 products or product types and 331 services. In addition, we assimilated data on the amount and quality of information provided by assistive technology services alongside assistive technology costs. We identify a range of products available across three areas: assistive technology used ‘by’, ‘with’ and ‘on’ people with dementia. Assistive technology provision is dominated by ‘telecare’ provided by local authorities, with services being subject to major variations in pricing and information provision; few currently used available resources for assistive technology in dementia. We argue that greater attention should be paid to information provision about assistive technology Corresponding author: Grant Gibson, Institute of Health and Society, Newcastle University, Baddiley Clark Building, Richardson Road, Newcastle Upon Tyne, Tyne and Wear, United Kingdom NE2 4AX. Email: [email protected]

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services across an increasingly mixed economy of dementia care providers, including primary care, local authorities, private companies and local/national assistive technology resources. Keywords assistive technology, telecare, dementia, United Kingdom, information provision

Introduction As population ageing creates new economic, social and health care demands, increasing attention is being paid to the role Assistive Technologies (AT) can play in the care of older people living with dementia. Despite seeing growing use within the United Kingdom and internationally, there is currently no clear consensus for the terms assistive technology or telecare, an issue which itself causes problems for both researchers and service providers. For the purposes of this review, we use the following definitions for AT, telecare and telehealth (Table 1). The United Kingdom is currently the leading European nation in the adoption of telecare, with 1.7 million current users, spending »106 million in 2010. United Kingdom spending on telecare in 2015 is projected to be »251 million (Deloitte Centre for Health Solutions 2012; Goodwin, 2010; Kamalasekar, 2010). Other countries are also rolling out AT at scale; for example Pols (2010) describes telecare as a ‘hot topic’ within the Netherlands, while the United States also has a well-developed private market for AT, as recognised in the Assistive Technologies Act 1998 (AT Act) (http://www.ataporg.org/history.html) (Robinson et al., 2013). Despite growing national and international interest, the evidence base for AT, telecare and telehealth has been largely limited to small local trials of individual devices or individual disease populations (Fry & Buse, 2013; Goodwin, 2010; Greenhalgh et al., 2013). Table 1. Definitions of assistive technology, telecare and telehealth Assistive Technologies A catch all term for ‘Any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed’ (Royal Commission on Long Term Care, 1999). Does not only refer to electronic equipment; can refer to quite simple devices such as calendar clocks, products providing assistance with activities of daily living, devices which promote activity and enjoyment. Telecare A subtype of AT which usually involves the remote monitoring of people living in their own homes, communicating with them at a distance via telephony and the internet. Devices used to facilitate independence and enhance personal safety. Telecare includes community alarms, sensors and movement detectors, and the use of video conferencing to communicate with carers. Telehealth A subtype of AT including technology-supported medical or nursing tasks undertaken in a person’s home or other remote site, especially sending biometric data from the patient to the health care system and/or sending advice, instructions or reminders from the health care system to the patient (Greenhalgh, Procter, Wherton, Sugarhood, & Shaw, 2012).



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In England, the Whole Systems Demonstrator (WSD) randomised controlled trial, the largest trial of telecare and telehealth in the world to date, attempted to address this lack of evidence by examining the clinical and cost-effectiveness of telecare and telehealth in three long-term illnesses (diabetes, chronic obstructive pulmonary disease and heart failure) (Steventon et al., 2013). Initial findings indicated that telecare and telehealth led to significant reductions in mortality rates and admissions into secondary care (Steventon et al., 2013). However, these conclusions have been complicated by later papers reporting the full results of the trial which found that the telehealth services offered within the trial had no significant effects on health-related quality of life (Cartwright et al., 2013) and were not cost effective (Henderson et al., 2013), while telecare services failed to reduce uptake of health and social care services (Steventon et al., 2013). In addition, difficulties with implementing both telecare and telehealth services as part of a ‘whole system’ approach and with client withdrawal within the trial have also been reported (Hendy et al., 2012; Rixon et al., 2013). Despite this UK health and social care policy continues to focus on the ‘mainstreaming’ of AT within health and social care, for example through initiatives such as ‘DALLAS’ (Delivering Assisted Living Lifestyles at Scale) and ‘3 Million Lives’ (Department of Health, 2005, 2006, 2009, 2012). Given increasing numbers of people with dementia within both developed and developing nations, the question of how AT can contribute to dementia care has also seen growing concern. Within UK dementia care, AT policy has developed based on assumptions that AT can reduce caregiver burden (McHugh, Wherton, Prendergast, & Lawlor, 2012), sustain cognitive and functional abilities (Gillespie, Best & O’Neill, 2012; Jensen, Maanson, Holthe, Hurnasti, & Gudnadottir, 2009), encourage ‘ageing in place’ (Brittain, Corner, Robinson, & Bond, 2010) and delay entry into residential or nursing care, thus leading to significant cost savings (Duff & Dolphin, 2007). In contrast, comparatively little policy attention has been paid to how AT can support everyday activities, well-being or quality of life (Orpwood et al., 2010; Orpwood, Sixsmith, Torrington, Chadd, & Chalfont, 2007; Scherer, 1996; Windle, 2010). Reflecting the wider evidence base for AT, dementia AT research to date has also comprised relatively small trials which have suggested that AT can bring significant benefits for users and/or cost savings for service providers (Burrow & Brooks, 2012; Woolham & Frisby, 2002). At the time of writing, no trials of AT on a scale comparable with the WSD have reported their findings, although the ATTILA (Assistive Technology and Telecare to maintain Independent Living At home for people with dementia) trial – a large-scale randomised controlled trial of telecare and its effects on community living in dementia was ongoing at the time of writing (Leroi et al., 2013). A commercial market has also grown to support the development of public sector AT services, with a small subsector also selling AT products directly to the public. As this market has grown, a small number of general AT resources such as the Telecare Services Association and Telecare Aware, and dementia specific resources, such as Ask Sara and AT Dementia, have also emerged, offering guidance on AT. How far service commissioners, health and social care professionals and the wider public are aware of these AT resources, and how far these resources are used in AT service delivery are currently unknown (Burrow & Brooks, 2012; Woolham, 2011). Providing useful and accessible sources of information about AT is crucial to their wider adoption and uptake; however, questions can be asked about how well health and social care professionals and people with dementia are informed about AT, how easily they can access both AT services and information about AT products and what resources are required to enhance awareness of AT now and in the future.



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This paper developed as part of a larger qualitative study exploring knowledge about, and use of AT among older people including people with dementia and their families, and aimed to determine the range and scope of AT products and services for people with dementia currently available in the United Kingdom, alongside the extent of publically accessible information resources about these services. The objective of this paper is to improve awareness of AT products and services amongst providers of health and social care to people with dementia. This is achieved through: . A review of the range and scope of AT products currently in the United Kingdom, available either via health and social care services or for public purchase, intended to benefit people with dementia and their carers. . Mapping of AT service provision across public, private and third sector services. . Summarising the literature concerning the availability and provision of information about AT products relevant to people with dementia and their carers. . Identifying opportunities for enhancing the value of AT for the care of people with dementia. In examining these issues, this paper will assist health and social care providers in dementia care to better facilitate knowledge transfer about this topic to people with dementia and their families, and to health and social care services involved in dementia care.

Methods The objective of this paper is to explore how people with dementia and their carers seek information about AT products and services, and their experiences of becoming informed about AT and its use in dementia care. Prior to commencing data collection, and to inform the development of a qualitative interview schedule, it was crucial to ascertain both the range of AT products currently available and the scope of publically available sources of information about such devices and services. We therefore carried out a scoping review of AT products and services available through either dementia services or private purchase between January and June 2013, based on examination of publicly available information sources. Using a snowball approach, our search began with two web-based information resources: ATdementia (www.atdementia.org.uk) (Burrow & Brooks, 2012) and AT guide (www.asksara.org.uk) (Savitch, Brooks, & Wey, 2012; Woolham, 2011). This in turn led to further resources, including websites for individual products, AT directories, charitable organisations, collaborative projects between the public and private sector, retail sites and product catalogues of major AT manufacturers (see Table 2). Searches were carried out by the first author, with peer review of products and services highlighted within the review also being carried out by other members of the research team. Searching was concluded when no further AT resources providing advice within a UK context could be found. As research has indicated that many people with dementia and their carers are relatively uninformed about AT (Hanson, Percival, Aldred, Brownsell, & Hawley, 2007; Rixon et al., 2013; Robinson et al., 2013), a second search examined the range of publically available information about AT services at the point of initial contact with services. This search began with an AT service database maintained by the UK Telecare Learning and Improvement Network (Telecare Learning and Improvement Network, 2013). This network maintains a publically available resource of UK AT services by locality, alongside information on



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Table 2. List of data sources used in AT product search Social Care Institute for Excellence (SCIE) www.scie.org.uk/publication

Assistive Technology Dementia websites www.atdementia.org.uk

Alzheimer’s Society www.alzheimers.org.uk

Foundation for Assistive Technology www.fastuk.org Telecare aware www.telecareaware.com Disabled Living Foundation www.dlf.org.uk/ wwwasksara.org.uk

Assist UK http://assist-uk.org/ More Independent www.moreindependent.co.uk Mick’s House www.mickshouse.info

Memory Apps for Dementia www.memoryappsfordementia.org.uk

Housing and Telecare Learning and Improvement Networks

Local Authority AT services

Local Housing providers

Online stores selling AT products

Commercial providers

List of available AT resources Book exploring telecare and quality of life in people with dementia; free download from www.dementiashop.co.uk Links to guides such as ‘Telecare and Dementia’ Searchable databases of AT products Assistive technology guide with examples of how technology can be used to help people live well with dementia In-built questionnaire to identify solutions according to individual need Hosts ‘AT guide’ jointly with disability living foundation General information and catalogue of ATs Sells a small range of AT products, mainly for communication and activities of daily living Leaflets and presentations on AT for carers and health care professionals FAST includes a list of exhibitions on its online listing of AT events News and information service for people interested in AT, telecare and telehealth Advice on general aids and funding Website, telephone helpline and follow-up service to help public and practitioners identify different equipment AT guide: a website providing advice about daily living for older people, including AT products Demonstrates and provides information about a varying range of equipment across the country Local information directory about AT services for Merseyside Includes links to AT for private purchase Website developed by Tynetec providing introductory information about telecare and its use in chronic illness Provides an interactive smart house including examples of AT products Includes a blog from a current telecare user regarding the benefits of telecare Research project investigating touchscreen technologies (tablet computers, smartphones) and software apps Includes database of currently available apps suitable for people with dementia National network supporting local service redesign through the application of telecare and telehealth Telecare LIN also provides Google Maps based resource of all Local Authority and private AT services within the United Kingdom 245 Local authority (city council, district council, county council) websites and information sources were reviewed Local authority sites include information on local AT services, available forms of AT, information on eligibility and referral, and costs 49 housing providers (housing associations, housing trusts) listed as providing AT systems Includes information on AT types, eligibility criteria and cost Online stores selling AT to service providers and the public. Examples include: healthandcare.co.uk, betterlifehealthcare.co.uk, cobolt.co.uk, qedonline.co.uk, thedisabledshop.com 38 private companies providing AT products



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providers and links to information about services. The websites of individual services identified within this database were reviewed to ascertain the range and scope of AT products available within each service, alongside costs and charging models, referral pathways and links to other AT services or AT resources such as those listed earlier. Where links were provided, these were followed up, with any new resources being included in the above search strategy. Links to manufacturers’ websites, product webpages, sources where products could be purchased or wider internet searches for the same product were also conducted.

Justification for exclusions to our review search strategy As we were only interested in products currently available through either public or commercial providers, we specifically excluded literature sources describing design prototypes, technology specifications or research in progress (for reviews of these products, see Carrillo, Dishman, & Plowman, 2009; Department of Health, 2013). So that we could focus only on dementia-specific AT products and services, we excluded general mobility aids such as walking sticks and aids, grab rails, hoists or similar devices. However, we did not limit our search to ‘high tech’ electronic forms of AT; we also aimed to include simple to use technologies, including those which may not necessarily be defined as ‘AT’ but which were included in the above resources. Our search therefore included simple ‘AT’ products such as dementia friendly signage and furniture, puzzles and games, cutlery, crockery and other household tools, and reminiscence books, software or objects. In addition, as most AT services served people with a number of health conditions, we did not restrict our search to those services exclusive to dementia care. However, we did note whether dementia was an inclusionary or exclusionary criteria for access to services, and whether services provided any dementia-specific products or services, or any information about the use of AT with those with dementia. Where available, information on referral pathways (e.g. through primary or secondary care services, occupational therapy or social services) and costs of AT products/services was also recorded.

Findings AT products for people with dementia Our AT product search identified 171 products or product types, organised into 11 categories based on their overall purpose and function. These categories were then arranged into three overall themes (see Figure 1): (1) Devices used ‘by’ people with dementia. These were devices that could be used independently by the person with dementia and were usually supportive and responsive products which helped people in completing their everyday activities in some way, by making activities easier (e.g. medication dispensers), by providing prompts (memory aids; simple signage) or by raising alerts (e.g. reminder alarms). (2) Devices used ‘with’ people with dementia. These were collaborative devices which fostered interaction between a person with dementia and other people or between the person and the technology. In most cases these devices encouraged, supported or enabled communication (e.g. reminiscence aids), or helped a person engage with others through interactive forms of ‘play’ (e.g. puzzles and games, sensory play).



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Figure 1. Types and sub-types of AT in dementia

(3) Devices used ‘on’ people with dementia. These devices could intervene in some way in a person’s life, but operated without the active or direct participation of the person with dementia. Such products could monitor people’s movements or activities, alerting a carer or tele-operator in an emergency (e.g. telecare), could give quick access to a person (e.g. keysafes) or could lessen or prevent the risk of harm from individual (e.g. fall detectors), internal (e.g. gas or smoke alarms) or external sources (e.g. telephone blockers). Although not exclusively so, the majority of these products sought to manage, lessen or mitigate risks to the person with dementia receiving them.



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It is important to note that these categories are not mutually exclusive. For example a simple to use telephone was a tool used ‘by’ a person, but could also help them to communicate ‘with’ others, while although the main purpose of telecare was remote monitoring without their direct involvement, they could also provide valuable social contact through a tele-operator (Milligan, Roberts, & Mort, 2011). Further, AT users also engage in what Greenhalgh et al. (2013) refer to as ‘bricolage’, in which people create new uses for devices in conjunction with other products according to their own needs, often in ways not specified as their designed purpose. Products were therefore organised according to their overall design goals or how they were marketed within their accompanying literature; however, it is important to note that these can differ when compared to the use of AT within real-world dementia care settings.

Devices used ‘by’ people with dementia These products were used ‘by’ people with dementia: to help people with their everyday activities, to orient people within time and space or to communicate with others. Five product categories were found: Time and place orientation. Many devices helped people with dementia tell the time or locate themselves in space (Torrington, 2009). Large face clocks which were easier to read were most common, although many of these gave the time and date in formats unsuitable for people with dementia (e.g. dd/mm/yyyy). In contrast, the ‘day clock’ (www.day-clock.com) gave the time as a period of the day (e.g. ‘it’s Thursday morning’), a format easier for people with dementia to intuitively understand. Examples of place orientation included simple room signage, reactive or adaptive lights which activated automatically upon movement or ambient light levels, or furniture which allowed contents to be easily seen. Predominantly found in residential care environments, these products could also be used in people’s own homes, although few of these products were promoted with this in mind. Prompting and reminder devices. Several devices aided memory by giving visual or audible prompts or reminders, using electronic or other means. The most common design was a recordable ‘Dictaphone’ which could record voice memos, but which could also be potentially difficult to use. A range of simple (e.g. mediboxes) or complex pill dispensers (e.g. pivotell) were also available. The simplest dispensers were clear plastic boxes separating pills by day and time. Electronic dispensers had similar features, but also could be connected to a telecare system, could lock and unlock automatically and had an integrated alarm alerting a carer or tele-operator if doses were missed. These dispensers have been demonstrated as a cost-effective means of promoting adherence to medication and of reducing medication-related hospital admissions (Improvement and Efficacy Partnership, 2012). However, difficulties with learning and recognition combined with often complex designs may restrict people’s ability to use them without help (Hopkins, 2005). Communication aids. Many products adapted existing telephone equipment in order to make them easier to use. Many such phones are inexpensive and are readily available in high street stores, but were rarely offered by AT services. Landline and mobile ‘photo’ phones attached photographs to speed dial buttons, allowing calls to be made by a single button press or by



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touching an image on screen. More specialist phone designs limited calls to pre-selected numbers via a single button speed dial function. Their limited functionality made them easier to use, but lacking a conventional keypad, in several cases they no longer looked like phones. The changed visual appearance of these mobile phones could therefore disrupt their recognition among people with dementia (Stephens, Cheston, & Gleeson, 2012). Aids for activities of daily living. A small range of simple, often low cost products helped people with dementia complete household activities. Although the design characteristics of many of these products made them particularly suitable for people with dementia, few were routinely available through AT services. Examples included cutlery and crockery in brightly coloured plastics, making them easier to recognise and safer to use. Electronic household products included television remote controls or simplified radios or music players, each with fewer, clearer buttons and which could give people continued access to leisure activities and electronic media. Alerts and alarms. A number of AT products comprised alerts and alarms which sought to assist people with their daily activities, in contrast to, or as well as alerting them to danger. Examples of such products were the ‘boil alert’, which rattled in boiling liquid to attract a person’s attention; easy to use kitchen timers to help with cooking; or the ‘magiplug’, a simple basin plug which automatically drained water from an overflowing sink or bath, but which also changed colour according to temperature, providing people with a visual aid. Most of these products were inexpensive and required little to no installation, but were only rarely available through AT services. Instead, in most cases they needed to be purchased privately.

Devices used ‘with’ people with dementia The smallest range of products identified in this review gave opportunities for social interaction, for creative play or facilitated self-expression and communication with others. Products covered three major areas: Communication aids. These objects assisted people with dementia to communicate with those around them. Most of these systems were aimed at residential care environments or towards professional carers looking after people in later dementia who had lost much of their verbal communication skills. Examples include Talking Mats (www.talkingmats.com), a card-based communication tool aimed at health and social care professionals, which could assist people with dementia or other communication difficulties to make choices or put across their opinions, helping them to remain involved in decisions about their care (Murphy, Gray, & Cox, 2007). Play and enjoyment. Several products promoted enjoyment through individual or group forms of play. Some were ‘High Tech’ commercial products; for example the Nintendo ‘DS’ and ‘Wii’ video games consoles. However most were simple, inexpensive games and puzzles, or products which promoted arts, crafts or other creative activities, usually designed for dementia, and often forming the basis for music, art, reminiscence or cognitive stimulation therapies (Beard, 2012; McDermott et al., 2013; Spector et al., 2003). Several products also used touch, sound and light to stimulate a range of sensory experiences;



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examples included a sensory cushion comprising different colours, materials and textures (Ball & Haight, 2005). Reminiscence aids. Many products promoted social interaction by encouraging reminiscence. Examples included generic photographic books evoking past events or historic objects which could create a themed environment and a familiar sense of place. Such products could be in paper form; use video, music and animations; or use touch, taste or smell to create differing sensory experiences. Most were generic (the 50s, ‘the old days’), but some products tailored activities to individual interests. For example life history books either used a paper format or electronic media to create an individualised biographical reminiscence tool. These provide a powerful medium for reminiscence, but required time, sensitivity and biographical knowledge of the person among carers in order to gain their full benefit.

Devices used ‘on’ people with dementia Comprising the most common forms of AT in terms of sheer number of products, these devices are described as working ‘on’ people with dementia. They required little to no input from the person and were used to monitor their activities, give other people access to them in an emergency, or limit or prevent people with dementia from doing things judged dangerous or risky (Mort, Roberts, & Callen, 2013). Three product themes are highlighted: ‘Telecare’ systems. Receiving arguably greatest attention among AT within UK health and social care policy, and comprising the greatest range of products, a typical telecare service comprised a community alarm which could also be connected to additional movement, pressure, moisture or magnetic sensors. These sensors were connected via a base unit and phone line/internet connection to a carer or call centre, who could then contact a person should an alarm be triggered or if activity levels fell outside a series of pre-determined norms. Telecare systems were modular, allowing expansion using further sensors/alarms as new problems arose. Often part of a telecare service, wearable fall detectors used accelerometers to detect the sudden change in orientation occurring in a fall and raise an alert. However although a common feature of telecare systems, how often fall detectors are used within falls management services is unclear (Brownsell & Hawley, 2004; Ward, Holliday, Fielden, & Williams, 2012). In addition, false alarms have been repeatedly highlighted as a problem, which may limit their use in dementia services (Roberts, Mort, & Milligan, 2012). Although often aimed at people with dementia, many parts of telecare systems, such as pendant alarms or wearable fall detectors, may be confusing or difficult for them to recognise. Such issues may limit their use in practice as people prove unable or unwilling to act in ways required by them by the technology (e.g. remembering to wear an alarm pendant) or are scared by its response to their actions (e.g. an alarm sounding if they approach an external door) (Hopkins, 2005; Orpwood et al., 2010). Location monitoring services. The subject of much academic, policy and public debate, a range of products used a combination of Global Positioning System (GPS) or mobile telephone technology to locate and ‘track’ the geographical position and movements of a person with dementia (Landau & Werner, 2012). These systems usually comprised a GPS locator within a bespoke device such as a mobile phone or were disguised as a belt, jewellery or piece of clothing. Devices could identify a person’s location on the screen of a phone or bespoke



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device via GPS co-ordinates or by marking their position on an online map. Simpler services were also available which could triangulate a person’s position using an existing mobile phone signal, giving their location by calling a phone number or visiting a website. Such services depended on the person carrying a mobile phone, but could cost only a few pence per call or few pounds per month. In contrast, bespoke GPS products could be tailored to people with dementia, but could also cost several hundred pounds and require continuing monthly subscriptions. Safety and security. A range of products sought to improve the safety and security of individuals by monitoring and where necessary restricting people’s activities (Orpwood et al., 2007). The simplest products disguised elements of the home (e.g. covering plug sockets) or operated lights or appliances by an automatic timer. ‘Keysafes’, when attached to an external wall, could give carers or emergency services quick access to house keys in an emergency. Part of most telecare systems, water or gas shut offs could detect and switch off any gas appliances or water flows in a home before alerting a carer. A subset of location services sought to prevent people from ‘wandering’ by raising an alarm asking if they really wanted to go outside, by informing a carer if a person passed through a doorway or using ‘geofencing’ to raise an alarm if a person moved outside a geographical boundary determined using GPS co-ordinates. Geo-fencing products have also seen debate regarding their use due to their potential to be coercive; for example by restricting people’s freedom of movement (Landau & Werner, 2012; Mort et al., 2013; Robinson et al., 2007). Finally two commercially available telephone blockers could screen telephone calls, reducing or eliminating nuisance telephone calls by diverting or cancelling any calls not on a pre-approved list.

Range and scope of AT service providers Our second search identified 331 AT services within the United Kingdom (see Table 3). The majority of services were provided by local/unitary authorities (245), with housing providers (48) or private companies (35) providing the rest. While many NHS trusts were involved with AT services, these services were typically managed by local authorities; only two services were provided through NHS trusts. Almost all local authorities provided community alarms, with 196 of these also offering telecare, either integrated into community alarm services or provided through a separate local entity. A small minority

Table 3. AT providers and types of AT service

Total number of services Community alarms Community alarms and telecare Telehealth Stand alone AT products GPS location services

Local authority

Housing provider

Charity

NHS trust

Private company

Total

245 244 196 5 15 3

48 47 25 0 2 0

1 1 0 0 0 0

2 2 2 0 0 0

35 33 29 4 7 2

331 327 252 9 24 5



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of local authorities (48) provided community alarms but no telecare service, although many of these also indicated that they hoped to provide telecare in the near future. Only nine recorded services provided telehealth services, with none providing telehealth specifically for people with dementia. Where such services were offered, they were usually for the treatment of other conditions such as diabetes or cardio obstructive pulmonary disease. Private AT provision remains a small sector of the market; 35 individual private providers were found, usually offering a combined community alarm and telecare service (29). Both public and private provision were dominated by products from a small selection of AT companies such as Tynetec or Tunstall, the current UK market leader. In 2013 the UK telecommunications company O2 also moved into telecare with the launch of the ‘Help at Hand’ telecare service provided in their own stores and through high street pharmacies. However, this service was subsequently withdrawn after only 4 months, citing poor awareness and slow uptake as reasons for its closure (Telecare Aware, 2013). Stand-alone AT products, including GPS monitoring and location devices were rarely offered as part of AT services. Although more services may provide GPS monitoring equipment as part of their service, only three local authorities gave information regarding these products in their service literature. In addition only 15 services claimed to offer products such as simple to use telephones, memory aids or aids for activities of daily living. Although toys, games and reminiscence tools can potentially be beneficial in dementia care, none provided these products as part of their service, while few provided links to other resources through which they could be accessed. This suggests that products assisting people with dementia with activities of daily living or promoting well-being and quality of life currently fall outside the scope of AT services, indicating a continuing gap in AT services for dementia.

Information about AT services, costs and charges Information provided by services was reviewed and classified according to whether services provided minimal or detailed information about their service and its products; whether services provided any further information such as photographs of products or information leaflets; and whether services also provide any instructional or promotional videos, interactive infographics or blogs or whether websites referred to any other AT information sources (Table 4). In addition, whether information regarding AT service charges and referral pathways was also included. To ensure inter-rater reliability, each service was organised into four thematic categories through discussions

Table 4. Information provision by AT services

Local authority Housing association Charity Private company NHS trust

Minimal information about AT service

Detailed information about AT service

Detailed information and literature about service

Detailed multimedia information about services

Total

113 13 1 5 1

46 11 0 20 1

76 18 0 7 0

12 5 0 3 0

247 60 1 35 2



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between two members of the research team, where a consensus regarding each service was reached. Since most AT is provided via local authorities, these services will play a key role in disseminating information about AT, either through themselves, by linking to other AT resources, or by providing information and referral pathways for other health and social services involved in dementia care. Although more than half of local authorities (134) gave detailed information about their services, AT products available, costs and referral pathways, 113 gave relatively little information to enable people to make an informed decision about AT without seeking further advice or which other services could provide during their consultations with people with dementia (for example within memory services, support groups or similar settings). For example these 113 services failed to provide examples of AT products, give information about costs or how to access them, or provide photographs or other visual representations of the technology. Given that aesthetics and visual design can play an important part in the acceptability of AT products in dementia, particularly among wearable ATs such as pendant alarms or fall detectors, providing visual examples of technology is an important consideration (Milligan et al., 2011; Orpwood et al., 2007; Robinson et al., 2009). Detailed information was provided by 76 local authority services, usually in the form of written literature about their services, with most also providing visual examples of AT. Twelve local authority services, five housing associations and three private companies also provided information in the form of videos, case study vignettes from previous telecare users, links to AT databases and resources or interactive examples of ‘smart houses’. Few services referred potential clients or others to external resources such as those listed earlier. We also collected data regarding AT service charges and retail prices of any AT products available to buy commercially. Of the 331 services identified in this review, over half (187) failed to give any information about pricing either on their websites or in their promotional literature. All private providers and housing associations, and almost all social care services charged for AT services, although at the time of writing eight local authorities made their services free to eligible individuals. Most telecare services involved the rental of AT equipment either through standardised packages (called ‘gold’, ‘silver’ and ‘bronze’ for example) or a ‘pay as you go’ approach where devices are rented as part of an individually tailored package. Pricing structures for both packages, but particularly for ‘pay as you go’ packages, could be complex and potentially confusing, involving installation costs, weekly, monthly or quarterly rentals, additional monitoring or call out charges, differing charges depending on geographical location and further assessments for those in financial difficulty or with severe needs. Mean cost for a basic community alarm package was »3.62 per week (range »0.00–»10.63), not including installation costs, which were usually charged separately. Call outs from domiciliary care staff or service wardens resulted in separate charges (of up to »70 per call) or could be paid for via a higher weekly/monthly rental charge. An expanded telecare service typically cost »10–»20 per week; however, this varied considerably depending on the number of sensors installed and whether home care support was included. These charges could vary greatly between local authorities, with the same service being significantly more expensive in some parts of the country, or lacking services available in other localities. Those with dementia could potentially access services without charge, or could be eligible for reductions, for example through the removal of Value Added Tax or as a result of receiving other state benefits. However, individuals usually had to undergo a



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separate assessment to receive any reductions, with the process through which assessments took place often being complex and unclear or subject to long delays. Given the continuing growth of a private market for AT, we also examined the pricing of AT available through private purchase. Costs varied hugely; small and simple products could cost a few pence or pounds while more complex telecare or GPS services routinely cost several hundred pounds, often with ongoing weekly, monthly or quarterly charges. As with social care provision, most private services focused on ‘high technology’, and therefore high cost telecare solutions, with less attention being paid to simple aids and adaptations, or to the use of existing technologies. In addition to purchase, many private AT services were also available for rental, with similar charges to those in social care. The simplest and cheapest products, for example products such as big button telephones or household tools were freely available from high street stores, but were not routinely offered as part of AT services, nor were they labelled as AT by many of these services. Other products could only be purchased from specialist stores selling health or mobility related products, from stores which supplied social care services, or direct from the manufacturer. Where such products were highlighted as beneficial, this was usually by specialist dementia resources, dementia charities or through word of mouth (e.g. internet forums or dementia cafes). How far health and social care professionals informally recommend these products is currently unknown, but in their promotional literature most AT provider organisations provided little information regarding AT outside of community alarms or telecare.

Discussion Reporting part of an ongoing qualitative study exploring how people with dementia and their carers seek information about AT, this review shows that the current AT market in dementia care is highly fragmented, with wide variation in the range and scope of products available, in access to AT services, service charges, in the range and scope of information available about AT, and in where, and how AT products could be accessed. Current UK policy on AT, with its emphasis on safety and risk minimisation through the use of community alarms and telecare, has left little room for a broader more person-centred use of technology in dementia care (May et al., 2011; Mort et al., 2013; Orpwood et al., 2007; Thygesen & Moser, 2010). Despite the availability of a number of AT products to enhance well-being and quality of life, these products appeared to only rarely be provided by AT services. Instead it seemed to be left to the private market to supply these products. Information about AT was supplied by a number of sources, including AT services, external AT resources, charitable agencies and the private sector. However despite being the largest provider of AT products, the amount and quality of information provided by local authority social care agencies was highly variable, with only half of public AT services giving sufficient information to help people make informed choices about AT, its benefits and costs, and few providing links to other information sources (Van Den Heuvel, Jowitt, & McIntyre, 2012). In contrast, information about AT was readily available from a small number of dementia-specific AT resources, such as the Alzheimer’s Society or AT dementia. It is likely that AT services frequently make use of these resources to inform people about AT; however, little is currently known about how far these resources are used in this capacity or how much they are accessed by people with dementia themselves. Publically available materials on AT are of course only one part of the processes through which services share information about AT. Many people with dementia will access



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information about AT through their initial and ongoing contact with services, with information being given in a variety of forms including literary sources, face-to-face contact, over the telephone and increasingly through internet-based resources. However, this review suggests that either limited or inaccurate provision of information by AT services, alongside infrequent signposting to other resources is a feature of the current AT landscape. This suggests that people with dementia and their carers will often have to seek out AT resources themselves, rather than becoming aware of them through their routine care. However, although few studies have explored the process of information seeking regarding AT in dementia, anecdotal reports suggest that use of the AT resources highlighted earlier may be increasing. For example, Burrow and Brooks (2012) describe increasing internet traffic to the AT dementia website, implying that health and social care professionals are increasingly referring people to these resources or that people with dementia and their carers are searching for it themselves. Further research is required to explore levels of knowledge about these resources and how these resources could be better used throughout dementia care. Although a mixed economy of AT services is developing, this review shows that most AT services remain based on local authorities (see also Barlow, Curry, Chrysanthaki, Hendy, & Taher, 2012). Although marginal in providing AT services, health care also plays an important role in the development of AT. In the United Kingdom, General Practitioners (GPs) are often the first port of call for people accessing information about living with dementia. However when compared to social care, knowledge among health care professionals regarding AT and its use is far less developed (Siota & Simpson, 2008). Historically, primary care has not seen AT and telecare as a priority (Robinson et al., 2013), with GPs currently receiving little specialist training about dementia and probably less on AT. In addition, a lack of enthusiasm about AT amongst primary care professionals or knowledge regarding its evidence base has been repeatedly identified as a key barrier to uptake (Corbett-Nolan & Bullivant, 2012; Sanders et al., 2012; Van Den Heuvel et al., 2012; Woolham, Gibson, & Clarke, 2006). How AT can be ‘sold’ to primary care in the future is open to debate but will be a significant challenge, as illustrated by the WSD, in which the integration of telecare and telehealth in a ‘whole system’ approach failed to take place (Hendy et al., 2012). A combination of stronger evidence about effectiveness, communicating this evidence to key stakeholders, better ways of sharing information about AT and guidance about how to access AT is required. Further research into how closer collaborations between social care AT services and primary care can best take place at the local level, and the barriers to collaboration between these organisations is therefore necessary (Hendy et al., 2012). Within this mixed economy of AT services, how the price and costs of ATs are perceived, and how far people with dementia and their carers are able and willing to pay for AT will influence the development of AT services. As most ATs are provided by social care, they are therefore subject to charges. Given continuing cuts to health and social care budgets, it is likely that the proportion of service charges met by individuals will continue to rise (Duff & Dolphin, 2007; Knapp et al., 2013). How potential service users perceive the value of AT will therefore have significant repercussions for the AT market. At a mean cost of »3.62 per week, a basic community alarm service may appear relatively affordable, but the costs of a full telecare system could quickly escalate, costing up to »10–»20 per week for a full system including home response. Although many could receive assistance with these costs, the often complex application and assessment processes necessary could discourage many from applying. Furthermore, ATs will be but one part of a wider domiciliary care



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package, whose overall costs are also likely to influence uptake. Despite being less expensive and more desirable for both individual and state than entry into residential care, many devices may be too expensive to either purchase or rent, with several devices having high prices relative to the generic technologies upon which they were based, only bringing limited or temporary benefits given their cost, or being unavailable in some areas. Such issues may lead to a situation in which those with greatest need find themselves excluded from AT provision. How far a ‘postcode lottery’ exists in public and private AT provision and how far people are willing and able to pay these costs therefore require further attention. Although growing, the private market for AT is still very small, with relatively few providers offering commercial AT services. Privately provided AT services often reproduced state telecare services, although a number also provided products not routinely available within public services, including GPS, geofencing and location monitoring products, aids to activities of daily living or products which encourage wellbeing. Despite its attempt to grow a mainstream AT service outside health and social care, the failure of the O2 ‘Help at hand’ service after only 4 months suggests that public awareness of AT is still too low to support this kind of market (Deloitte Centre for Health Solutions 2012; Hendy et al., 2012; Telecare Aware, 2013). This is even truer in dementia, where awareness of the wider range of products beyond telecare appears poor even among health practitioners and social care providers. For such a private market to develop, further attention needs to be paid to how people with dementia, their carers and professionals become informed about AT, and how this process can be better supported across health and social care agencies, AT resources and commercial AT services. It is important to note the limitations of this review. First, the fast pace of technology development and the rapidly changing nature of service provision mean that our findings will quickly become out of date. Second, our review is also limited to products available in the United Kingdom. As the United Kingdom has adopted AT to a greater degree than many other European countries, it is possible that several of products may be unavailable, may not be widely used or may take different forms in other countries. Similar or alternative technologies are being used in other countries; examples include MedicAlert , Alzheimer’s Association Safe Return and ComfortZone in the USA (http://www.alz.org/care/ alzheimers-dementia-gps-comfortzone.asp), the ‘Safe to Walk’ system in Australia (http:// www.safe2walk.com.au/) and the ‘Paro’ robotic seal from Japan (wwwparorobots.com). However, differing cultural attitudes towards dementia care may mean technologies are used differently in other countries, in ways that are less acceptable across differing cultural contexts (Shibata & Wada, 2011). Care therefore needs to be taken when applying these findings to other countries adopting AT.

Conclusion – recommendations for practice Drawing on the findings of this review, in order to support greater public awareness of AT and its role in dementia care we suggest that greater attention needs to be paid to how information and support about a wide range of AT can be best provided across both an increasingly mixed economy of dementia care and a new NHS organisational structure, with clinical commissioning at its heart. Existing resources such as AT dementia play an important role in informing people and health and social care services about AT; this role should be expanded and thus may require increased support and greater financial assistance. In addition, greater attention needs to be paid to educating health professionals about such



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existing resources as primary care plays an increasing role in dementia care, so that AT may be more widely used in a proactive way before people access social services assistance. Further attention also needs to be paid to the growing significance of private provision of AT, its implications for a mixed economy of AT services, the role that information provision and awareness campaigns will have to play in this mixed economy, and the ethical and practical implications that privately provided AT products and services will bring.

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Spector, A., Thorgrimsen, L., Woods, B., Royan, L., Davies, S., Butterworth, M., & Orrell, M. (2003). Efficacy of an evidence based cognitive stimulation therapy programme for people with dementia: Randomised controlled trial. British Journal of Psychiatry, 183, 248–254. Stephens, A., Cheston, R., & Gleeson, K. (2012). An exploration into the relationships people with dementia have with physical objects: An ethnographic study. Dementia, 12, 697–712. Steventon, A., Bardsley, M., Billings, J., Dixon, J., Doll, H., Beynon, M., . . . Newman, S. (2013). Effect of telecare on use of health and social care services: Findings from the Whole Systems Demonstrator Cluster randomised trial. Age and Ageing, 42, 501–508. Telecare Aware. (2013). O2 to stop selling telecare and telehealth in the UK. Retrieved from http:// telecareaware.com/o2-to-stop-selling-telecare-telehealth-in-the-uk/#comments. Telecare Learning and Improvement Network. (2013). Telecare Services in the UK. Updated to September 2013. Retrieved from https://maps.google.co.uk/maps/ms?msid=20007249194651384 3805.0004540c223f16f2d1c9d&msa=0. Thygesen, H., & Moser, I. (2010). Technology and good dementia care: An argument for an ethics-inpractice approach. In M. Schillmeier, & M. Domenech (Eds.), New technologies and emerging spaces of care. Farnham, UK: Ashgate. Torrington, J. (2009). The design of technology and environments to support enjoyable activity for people with dementia. Alter, 3, 123–127. Van Den Heuvel, E., Jowitt, F., & McIntyre, A. (2012). Awareness, requirements and barriers to use of assistive technology designed to enable independence of people suffering from dementia. Technology and Disability, 24, 139–148. Ward, G., Holliday, N., Fielden, S., & Williams, S. (2012). Fall detectors; a review of the literature. Journal of Assistive Technologies, 6, 202–215. Windle, G. (2010). Does telecare contribute to quality of life and well-being for people with dementia? Journal of Dementia Care, 18, 33–36. Woolham, J. (2011). The AT guide self-assessment tool under development at www.atdementia.org.uk. Journal of Assistive Technologies, 5, 26–28. Woolham, J., & Frisby, B. (2002). Building a local infrastructure that supports the use of assistive technology in the care of people with dementia. Research, Policy and Planning, 20, 11–24. Woolham, J., Gibson, G., & Clarke, P. (2006). Assistive technology, telecare and dementia: Some implications of current policies and guidance. Research Policy and Planning, 24, 149–164.

Grant Gibson is a Social Gerontologist and Research Associate at the Institute of Health and Society at Newcastle University. Dr Gibson’s research interests include the provision of non-drug therapies in dementia and older men’s health. He is currently working on a number of projects investigating the delivery on non-drug interventions for Dementia in Primary Care. Lisa Newton is a general practice registrar and academic clinical fellow at Newcastle University. Dr Newton’s research interests include assistive technologies to improve independence for dementia patients. Gary Pritchard is a sociologist and researcher at Newcastle University. His research interests are eclectic and include ethnography, South Africa, hip-hop, disability and social gerontology.



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Tracey Finch is senior lecturer in Psychology of Health Care. Her research focuses on implementation and evaluation of new technology, and includes studies of e-health, telehealth, telecare and assistive technology. Katie Brittain is a social gerontologist who has researched and published widely around the impact of ill health on older people and their carers, particularly with reference to continence management. More recently, her programme of research has focused around how aspects of the physical, social and technological environment pose challenges and opportunities for older people and their wider community. Louise Robinson is a GP and professor of Primary Care and Ageing at the Institutes of Ageing and Health/Health and Society, Newcastle University. She is also the Royal College of General Practitioners National Clinical Champion for Dementia. She leads the Primary Care Clinical Studies Group for the Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) and is part of the Ministerial Dementia Research Group.


Assistive technology for memory support in dementia.

A predictive model for assistive technology adoption for people with dementia.

Assistive technology for children and young people with low vision.

Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers.

The everyday use of assistive technology by people with dementia and their family carers: a qualitative study.

Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study.

The Cybathlon promotes the development of assistive technology for people with physical disabilities.

The role of cost-effectiveness for vascular surgery service provision in the United Kingdom.

Ophthalmologic services for the people of the United States.

Assistive technology provision within the Navajo Nation: user and provider perceptions.

The diversity of speech and language therapy services for aphasic adults in the United Kingdom.

Potentially inappropriate prescribing among older people in the United Kingdom.

Health professionals' provision of lifestyle advice in the oncology context in the United Kingdom.

The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference?

Provision of dementia-related services in Canada: a comparative study.

Assistive technology for persons with emotional problems.

Test-retest reliability and agreement of the Satisfaction with the Assistive Technology Services (SATS) instrument in two Nordic countries.

The provision of health and social care services for older people by respite providers.

Job roles of assistive technology service providers in the United States.

Challenges of user-centred assistive technology provision in Australia: shopping without a prescription.

Provision, organization and models of heart valve clinics within The United Kingdom.

Neurology in the United Kingdom. II: A study of current neurological services for adults.

[Assistive Services in the Workplace of People with Hearing Impairment in the State of North Rhine-Westphalia].

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