Assistive Technologies and Telematics
This section of the report describes the range of existing technologies of potential value to community based dementia care. Examples of possible applications of assistive technologies are given and innovative ways to enhance dementia care provision using telecare (care services provided at a distance) support via the Internet and email is explained. A selective list of suppliers and sources of information on assistive technologies is provided in the appendix to this report.
The need for a reappraisal of existing approaches to dementia care
A radical review of dementia care provision is essential if we are to meet the expected growth in demand for formal support over the next twenty years. The demographic and social trends discussed in section one of this report point clearly to an increase in demand for services and a corresponding reduction in the ability of families to provide informal support.
Current care services are labour intensive and costly. Social attitudes and ageism, even amongst professional groups, contribute to the perception of care work with older people as low status work. Staffing costs can be high due to the labour intensive nature of current strategies, despite the relatively poor pay and conditions that main grade carers endure. The cost of providing care for people with Alzheimer's disease, the most common form of dementia, has been estimated at £1,039 million in 1991, twice the cost of coronary heart disease the most common cause of death in the UK. Residential care for people with Alzheimer's dementia alone was estimated to have cost £676 million. (Gray & Fenn, 1993) Provision of home support in South Lakeland is complicated by high travel costs and relatively poor access to some areas of South Lakeland.
Improvements in the efficiency and effectiveness of existing services can be achieved by focusing service interventions on areas, such as counselling, advice giving and training for carers and staff as described in section two of this report. Technological advances during the last decade offer additional opportunities to enhance dementia care support in the community. Telematic health and care services are already in existence across the UK and Europe. With high levels of government and commercial interest in new schemes, future health and social care services will almost certainly include a range of services enhanced by telematics.
The term ‘assistive technologies’ refers to technologies that are used to assist people with disabilities, impairments or additional support needs to maximise their independence and potentials. A wide range of assistive technologies are available. From simple electronic or mechanical devices to specialised computer software to help disabled people to function better in a poorly adapted world. The value of these devices is in their capacity to help people with disabilities overcome functional handicaps and disadvantages. This is a critical point and one that it is important to state forcefully from the outset. Technologies have no intrinsic value and they are valuable only to the extent that they improve or maintain the quality of life of those who use them. This needs to be kept in mind later when we consider the ethical implications of using assistive technologies.
Assistive technologies have a developing potential for application in dementia care settings. Often the technologies used are non-specialist electronic devices and systems that can be adapted for use in home support. Electronic sensors and switches have been used in industrial and domestic settings for many years to control timers, locks, temperature and monitoring equipment. More recently specialist manufacturers and designers have begun to realise their potential use in assisting people with disabilities to live more independent lives. Development of specific products suitable for use in dementia is still in its infancy but with the rapid pace of technological change, we can expect to see new and innovative products become more widely available over the next few years. For example, the development of the micro chip, computer software and micro engineering in the last decade has already contributed to increased automation in the home and the concept of a 'smart home' environment. A 'smart home' is an ordinary home that has been equipped with a range of electronic and computer controlled devices. These will typically include, voice activated controls, video conferencing, temperature control systems, infra-red or pressure sensitive switches to control lighting water supply and door opening. Many observers believe that the
'smart home' will become the rule rather than the exception in homes over the next decade. This will have considerable advantages for people with physical disabilities but the development of automated environmental controls, communications devices, activity monitoring and safety devices may also be of value to people with dementia and their carers.An outline of some potential applications of existing electronic devices is given below.
Safety in the home can be a particular problem for people with dementia. Poor short-term memory can lead to cookers being left on leading to accidents with hot water and kettles. The level of safety in the home can be improved by fitting gas and electric cut off switches to appliances. Infra red sensors controlling the taps could be used to ensure that taps are turned off or to ensure safe water temperatures. Infra-red controls can be used to make showers safer and easier to use, control toilet flushing and open or close doors. Pressure mats and infra red sensors can be linked through computer software to monitor activity and environmental conditions in the house. When the computer has 'learned' the lifestyle pattern a call system to neighbours or family can be activated if, for example, there is no activity in the house when the system 'knows' there should be. (BT 1998) Electronic medicine dispensers can ensure that drug dosages are not exceeded and can help people in early stage dementia to cope with medication.
Diary and scheduling software can be adapted to the needs of people in early stage dementia. With information and reminder alarms entered by carers or care staff these relatively simple devices can aid some people in early stage dementia to remain independent for longer. Scheduling software can also be used by care professionals to record information about home visits, physiotherapy, changes in medication etc. so that information can be reviewed by the person with dementia or their carer at a convenient time. An electronic diary can be pre-programmed by the carer with audible and visual reminders for such things as medication, meal times, time of day, social events and appointments.
A home PC can be used to run memory training software to help people with early stage dementia develop memory coping strategies. Computer strategy and language games can be used to provide mental stimulation and help dementia sufferers to retain mental capacities. Carers have reported that even people in the later stages of dementia can enjoy active involvement and gain pleasure from computer games. (CANDID mailing list July 1999)
Closed Circuit TV (CCTV) has been available for some years and has recently become a viable option for use with intercom and door opening systems in domestic settings. High street systems can operate through and ordinary TV and provide for visual identification and communication with callers. Video conferencing software is rapidly developing and is likely to become much more commonplace in the near future. Video conferencing allows users to have direct visual and auditory communication via computers and telephone or Internet connections. Video conferencing systems are already in use in community care settings to provide support and therapeutic intervention for things like physiotherapy, speech therapy and health care advice (see Emery 1998 & The Journal of Telemedicine for examples).
The term 'telematics' refers to the use of communications technology, often computer systems, to provide a service 'at a distance'. Although these technologies have been available for many years it is only comparatively recently that health and social care agencies have begun to consider the potential of telematics in care settings. To some extent the recent explosion of Internet and email facilities and the popularity of home computers has provided the impetus.
Information and Communications Technology
Information and communications technology can help to support informal carers, professional staff and service planners in their day to day work by providing fast and efficient access to information and research findings. Telematic systems can be used to support traditional face to face clinical care and a wide range of developments are already underway in the UK and across Europe (The Journal of Telemedicine and Telecare). Access to computerised patient data systems by primary care and social care staff can improve referral and response times and result in substantial economic efficiencies. (Cornwall Health Authority 1999) Electronic links between social care providers, medical services and educational institutions can provide for a wide range of care and social needs. Links to outpatients departments from the GP surgery or the 'bed state' of local residential homes can provide professional carers with up to the minute information on the availability of local support services.
Information and communications technology can also be used more directly for care of people in the community.
The Potential of Telecare Systems
Telemedicine (medicine at a distance) and telecare (health and social care at a distance) projects are already operating in various care fields across Europe and include projects in antenatal care
emergency medicine, health care information, diabetes care, renal dialysis and pathology consultation. (ECHO Web site, 1999 & Journal of Telemedicine and Telecare)A number of possibilities exist for application of telematics to carer support for people with dementia. The Grove Medical Centre in London offers a range of telehealth facilities as part of their primary care service to patients. (Institute of Health Services Management 1999) These include:
Communications technologies such as Internet, email and video conferencing facilities are already being used to provide support for older people in the community. (Emery, 1998, CANDID website 1999) Contrary to popular beliefs, older people are becoming increasingly enthusiastic about new technologies. Especially where those technologies can be shown to have a practical value. (Berthold 1997)
The Potential of the Internet and email
(Note Readers who are unfamiliar with the Internet and email may wish to may wish to refer to the glossary of terms at the end of this section to clarify some of the basic terminology)
The simplest and most cost effective systems to use for telematic services are email and the Internet. Initially designed as a means of sending information around the world via university computer networks they have now developed into a major form of communication for everyday use and have many potential applications in care settings. For example,
written materials remind patients, families and professionals of the wellness (and not just the dysfunction) inherent in the early stages of dementia can serve an essential educational purpose and enhance the quality of service provision generally (Yale, 1999). The availability of these materials on the Internet or via email serves to increase access and reduce distribution costs.Internet connection provides for world-wide communication and access to information, education, shopping and health care advice for the cost of a local telephone call. These facilities can increase participation and access to socially valued activities for people with dementia and their carers, and go some way towards alleviating social isolation.
The Internet
The Internet is a world wide communication network based on computer systems and telephone connections. Computer files are published as ‘web pages’ and stored as ‘web sites’. The Internet offers the opportunity to enhance the quality of care services by providing interactive information and advice services via web sites on the Internet.
Internet web sites:
The Internet is a cheap and efficient system for communicating and sharing text, audio and visual information. Access to the Internet requires a telephone line and a basic PC or Apple Macintosh computer fitted with a modem. Start up costs can be less than £500 for a computer and basic software. Access to the Internet currently costs no more that the cost of a local telephone call.
Almost every official document and record today is word processed and it is a relatively simple matter to convert these documents to web format. Suitable documents can then be loaded onto a web site for public viewing. Web site design is becoming easier with recent improvements to web authoring software. It is relatively simple, after a short period of training, for anyone reasonably proficient in word processing to design and maintain a basic web site. Special facilities such as site search engines, mailing lists, chat rooms and on line forms can be added to enhance the value of the site. Web site pages can also be made available in CD format for use in situations where there is no Internet connection. Telematic facilities such as video telephones, video conferencing, email and Internet access can help to reduce social isolation for carers and people with dementia.
Email is a system for sending electronic messages from one computer to another using telephone lines. It provides users with a personal electronic address and the ability to read and send electronic messages or documents around the world for a fraction of normal postage and telephone charges. Email messages can be read and responded to at a time convenient to the user. Mailing lists and discussion groups provide facilities for group social communication and specialist advice.
Email is easy to use and offers:
Personal Development and Self Esteem
Most people value opportunities to develop their abilities in existing and new skill areas. Supported training in using the Internet and email can provide an opportunity for people with dementia and their carers to gain new skills and improve their self-esteem. Syracuse University in the USA provides supported access to computer based therapies for people with Alzheimer's (ASCEND 1998) The project uses student volunteers to support people with dementia to use memory training packages and Internet learning activities.
Many people with dementia rely on a spouse or close relative to provide care and it may be some time before the carer actively seeks support from formal care services. Often the care arrangements are near breaking point and dementia may be quite advanced before care services become actively involved. At this point it may be the carer rather than the person with dementia, who needs most support. The continuation of home support is largely dependent on the ability and willingness of the carer to continue to provide care. The ability of the carer to access social support networks is critical factor in maintaining an informal care arrangement. In some cases the carer lives with the dementia sufferer and has become socially isolated. Telecare provision offers an additional way to alleviate some of this isolation.
Typical professional care interventions in the community involve visits to the clients home, completion of assessment documents, return to the office and, perhaps, a good deal of multi-agency liaison in order to clarify the availability of services. Professional carers tend to rely on previous experience to inform their decisions. (Nurius & Gibson, 1990) Consequentially, formal interventions in dementia care change very slowly with services such as respite care, day care or full time residential care continuing to dominate professional support for carers.
Recognition of the importance of informal care and the maintenance of independence for the service users are acknowledged factors in good practice for health and social care professionals. But the range of services to support carers or enable people with dementia to remain independent and in their own home remains underdeveloped. Many carers simply struggle on until the situation deteriorates and admission to full time institutional care becomes the only option. Commonly this is the result of the delay between initial diagnosis and active involvement of community care services. Perhaps this is why studies have shown that practical assistance from formal support networks, including respite care, do not appear to significantly reduce self reported carer burden. (Colerick, George et.al. 1986. and Flint, 1995) Assistive technologies and telematics can be particularly effective in the early stages of dementia, helping people to maintain their independence and providing another medium for advice and counselling.
The ability of care services to meet even current demand is already in question. More of the same, namely residential homes, community support workers, day care etc., will not be sufficient to meet demands in the near future. Technological solutions are beginning to emerge that offer enormous potential for improving local provision and these need to be considered now. Appropriate systems need to be identified and incorporated into service plans at an early stage. It is commonly assumed that older people are unwillinng to consider technological interventions in care. Contrary to this studies have shown a positive interest in technology among older people. (Berthold, 1998) British Telecom and the Anchor Trust also found enthusiastic support for high tech home support systems amongst focus groups of older people during preparation for their telecare project. (British Telecom 1998)