Memorandum by the Independent Consortium
1. FOCUS OF
THE SUBMISSION
This submission addresses the application of
research in technology and design to improve the quality of life
of older people, with particular reference to people with dementia.
2. EXISTING TECHNOLOGIES
THAT COULD
BE USED
TO A
GREATER EXTENT
TO BENEFIT
OLDER PEOPLE
Recent years have seen a rapid growth in research
and development of new technologies to improve services and enhance
the independence and quality of life of older people living at
home. The actual and potential role of new technologies has been
recognised in the National Service Framework for Older People
(Dept of Health, 2001). A wide range of applications are being
developed or are already in the marketplace, addressing both the
direct and indirect support of frail and disabled people (Sixsmith
1998), for example: smart housing, client monitoring, teleconsultation,
health and social care assessment, client records and care planning,
client support (eg emergency response, counseling, information),
health and social care information systems. However, the specific
needs of older people with dementia have only been recently addressed
and there remains considerable scope for research and development
for this client group within a number of key areas (Judd et
al, 1997; Sixsmith 2002; Orpwood 2002; Woolham and Frisby
2002a, 2002b; Bjoerneby et al, 1997):
Supervision and surveillance. One
of the major concerns in supporting cognitively impaired older
people at home are the potential safety risks involved and the
use of automatic alarms to highlight dangerous situations has
received increasing attention from technologists and academics
(cf Sixsmith 2000). For example, wandering behaviour may pose
a significant risk for an individual as they may get lost or be
unable to cope with the potential dangers of the outside world.
However, restraint may be an undesirable or unethical option for
people. Systems can be installed to determine whether a person
has left a room or building and either use a prompt to discourage
them from leaving or send a message to a carer or service provider
if they do.
Safety and security. The home environment
can be a dangerous place for cognitively impaired people. For
example, they may leave cookers and heaters unattended, while
gas and electricity is potentially lethal if misused. "Smart
housing" technologies may be particularly useful for people
with dementia, automatically shutting off devices or allowing
remote control by carers or service providers. Smart housing could
also use sensors to control household appliances and devices,
depending on movements and activities of person. Technologies
that can provide such back-up whilst still empowering the person
and not taking control away from them have been demonstrated (Orpwood
2002).
Environmental control. Sensors for
heating, cooling, ventilation, day and artificial lighting can
automatically regulate comfort in the internal environment using
systems that incorporate good energy management. In addition to
passive controls it is recognised that it is important for autonomy
and the sense of comfort for the individual to have the ability
to actively control their environment, yet most available controls
are not appropriate for older people with dementia. There is a
need to develop better interfaces to enable people to regulate
their own comfort.
Carer support. Carer support is a
key aspect of care in the community. Using telecommunications
to carry out more routine tasks, such as shopping or going to
the bank or post office, may provide them with more free time,
relieving the "burden" of care. Access to information
advice and counselling is also important. Smart house technology
can also improve the quality of life of carers through ensuring
careful monitoring of activities and alerting the carer only when
necessary, eg allowing a carer to sleep secure in the knowledge
that they will be woken if the person gets up and needs attention
or reassurance.
Reminder devices. New technology
could also provide "reminder devices" to support independent
living (European Commission, 1996; Woolham and Frisby, 2002a).
These can provide cognitively impaired people with suitable decision
support software to help in carrying out actions such as household
activities, social participation, communication and vocational
tasks.
3. THE DEVELOPMENT
OF NEW
TECHNOLOGIES
The development of technologies for people with
dementia has generally focused on safety and security issues.
However, there may be opportunities for more positive uses of
technology to enhance quality of life. For example, Marshall (1997)
suggests using technology to identify when a person is restless
and bored and then initiate a familiar or enjoyable activity,
such as playing familiar music or videos. Aromatherapy rooms could
emit relaxing aromas to alleviate stress, while the use of telecommunications
could help to reduce social isolation.
Research and development within assistive technologies
needs to reflect the specific needs of cognitively impaired people
as well as those people with physical impairments (eg mobility,
sensory, motor, control and manipulation). For physically impaired
people, the underlying basis for technological development and
design is to remove the environmental barriers that turn a person's
impairment into a disability. In contrast, cognitively impaired
people may have impaired abilities to understand their environment,
formulate plans, carry out actions, communicate or remember what
they have done or where they are. This has a number of implications
for the development and implementation of telecare for this client
group. For example, people with physical disabilities can directly
interact with assistive technology. Someone with arthritic hands
can benefit enormously from taps that are turned on by simply
moving their hand in front of an infra-red sensor. For someone
with dementia such devices are confusing and inappropriate. Design
engineers need to develop assistive technologies in a way that
the user's interaction is the same as they have always used in
the past. For example the taps in the Gloucester smart house for
people with dementia (Orpwood 2002) look like traditional taps
but actually just operate sensors that can monitor how far the
user has turned them. The house is then able to control water
to flow at the rate desired, or it can shut the tap off if the
user leaves it running.
While it is accepted that technology can assist
people with dementia there is also widespread concern about its
potential misuse, and a fear that technologies designed for specific
functions such as minimising risk can have a seriously negative
impact on quality of life. It has been noted that there has been
much greater take up of technologies that promote safety and the
monitoring of health than those that support quality of life (Marshall
2001). Problems have been highlighted such as the potential erosion
of privacy by the extension of telemedicine into the home environment,
or the excessive restriction of the individual that can be concomitant
with a safety and security culture. The potential for technologies
to be a channel for ageism and the need for the user to be in
control is recognised (Fisk 1999) and the challenge is to design
technology interfaces that empower rather than restrict. There
is a need for a better understanding of the dynamic between a
range of technologies and their impact for good or ill on quality
of life, to enable informed judgements to be made by specifiers
and selectors of systems and devices for people with cognitive
impairment.
It is important that the implementation and
application of new technologies and related services are grounded
in a thorough understanding of the individual within their social
and care networks (Kitwood, 1997; Pieper and Riederer, 1998).
The needs and abilities of the person may vary considerably. People
in the early stages of dementia may be able to cope reasonably
well with only limited care, while others may be require considerable
help and support. Important individual factors to consider are
level and stage of cognitive impairment, ability to carry out
activities of daily living, problematic and emotional factors
such as anxiety and tendency to "wander". The informal
and formal care networks will also determine the kinds of technological
interventions that are needed. Again this will vary from individual
to individual, depending on factors such as availability of informal
carer, physical proximity, carer network and capacity to provide
care. The application of new technology needs to be tailored in
order to complement the person's abilities and capacities and
to provide help and support to care providers.
4. HOW EFFECTIVELY
IS RESEARCH
CO-ORDINATED
IN THE
PUBLIC, PRIVATE
AND CHARITABLE
SECTORS (INCLUDING
INTERNATIONALLY)?
The independent project comprises researchers
at three universities and representatives from industry, social
care and the voluntary sector. We are confident that the expertise
within the group is adequate to take on a very challenging project,
both conceptually and technically. However, the interdisciplinary
nature of the project requires collaboration between several institutions
and it is unlikely that a single institution would have all the
relevant expertise.
5. IS THERE
SUFFICIENT RESEARCH
CAPABILITY IN
THE UK?
It should be noted that both UK and European
research funding is restricted to home nationalities, making it
difficult for other countries (eg USA and Japan) to participate
in collaborative work, even when this is desirable.
6. IS THE
RESEARCH BEING
USED TO
INFORM POLICY?
The Independent project addresses an important
health and social care user group, with a prevalence of dementia
of around 4-5 per cent of the over 65 population. The current
Government has set a clear agenda to improve level and quality
of services to support independent living within the community
and the development of technologies is recognised as an important
part of this process (DoH 2001). The following recent statements
are also noted:
"By 2006 a further 100,000
people each year will be supported to live independently at home
through extra intermediate and home care services" ("Delivering
the NHS Plannext steps on investment, next steps on reform"
April 2002).
"Improve the quality of life
and independence of older people so that they can live at home
wherever possible, by increasing by March 2006 the number of those
supported intensively to live at home to 30 per cent of the total
being supported by social services at home or in residential care."
(Priorities and Planning Framework for 2003-06 "Improvement,
expansion and reform: the next 3 years").
"Service capacity increased
in other key services which support people at home so that in
2006: 30,000 more people a year receive care packages involving
five hours or more a week of home care; 500,000 more pieces of
community equipment are provided; there are 6,900 more extra care
housing places. An increase of 6,000 in the number of people in
care homes supported by councils over the three years to 2006."
(Priorities and Planning Framework for 2003-06 "Improvement,
expansion and reform: the next 3 years").
Current policy will require a change in the
planning process, making it bottom up rather than top down and
is implicitly looking for step change in achieving objectives.
Plans are made locally but must meet these national targets that
are "not negotiable". The implications of the policy
and the demographics of increasingly older populations are that
people with dementia will delay their entry into residential care
and so methods of providing security, safety and support within
the home for increased levels of dementia will be needed urgently.
Equally, the eventual entry into residential care of patients
with more severe dementia will affect the patient mix and the
care needed in nursing and residential homes.
Exploitation of the outputs of R&D has been
relatively limited. The emergence of new technologies within telecommunications,
sensoring, artificial intelligence, robotics etc offer tremendous
opportunities and, potentially, new technology could play a significant
role in the delivery and support of community care services. However,
the care industry has shown only limited signs of utilising new
technology to improve products and services. New business and
service models are required to allow technologies to be integrated
within existing structures. Attention also needs to be paid to
ethical issues and practical aspects such as installation and
maintenance
7. REFERENCES
Bjoerneby S (1997) The BESTA flats in Tonsberg.
Using technology for people with dementia. Oslo, Human Factors
Solutions.
Cooper, R G (1988) "Winning at New Products"
pub Kogan Page. ISBN1-85091-769-8.
Department of Health (2001) National Service
Framework for Older People. www.doh.gov.uk
European Commission (1996) Telematics Applications
Programme, Disabled and Elderly Sector: Project Summaries. DGXIII-C5,
Brussels.
Fisk, M (1999). Our Future Home: Housing and
the Inclusion of Older People. London, Help the Aged.
Judd, S., M. Marshall, et al (1997).
Design for Dementia. London, Hawker Publications Ltd.
Kitwood T, 1997 Dementia Reconsidered, Buckingham
OU Press.
Marshall, M. (2001). "Dementia and technology.
Inclusive Housing in an Ageing Society". In S M Peace and
C Holland (Eds). Bristol, The Policy Press.
Orpwood, R (2002) "A `smart' house to support
the person with dementia". In Dementia Topics for the Millennium
and Beyond, Ed S. Benson. Hawker, London. pp 87-90.
Pieper, R, Riederer, E (1998) Home care for
the elderly with dementia. In Graafmans J, Taipale V, Charness
N (eds) Gerontechnology: A Sustainable Investment in the Future.
Amsterdam; IOS Press, 324-330.
Poulson D, Ashby M and Richardson S (1996) Userfit:
A practical handbook on user-centred design for assistive technology.
Loughborough: HUSAT.
Sixsmith, A J (1998) "Telecare at home".
In Walker, A. (ed) European Home and Community Care 1998-99. London:
Campden 141-142.
Sixsmith A (2000) "An evaluation of an
intelligent home monitoring system". Journal of Telemedicine
and Telecare, 6, 63-72.
Sixsmith A (2002) "New technology and the
care of cognitively impaired older people". In Copeland J,
Abou-Saleh M Blazer D (eds) Principles and Practice of Geriatric
Psychiatry. Chichester: John Wiley and Sons.
Woolham, J and Frisby, B Building a Local Infrastructure
that Supports the use of Assistive technology in Dementia Care.
Research Policy & Planning 2002 Vol 20 No 1.
Woolham, J and Frisby B (2002) Using Technology
in Dementia Care. In Dementia Topics for the Millenium and Beyond,
ed S Benson. (Hawker: London p 91-94).
September 2004
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