=Paper=
{{Paper
|id=Vol-499/paper-2
|storemode=property
|title=REAFF - A Framework for Developing Technology to Address the Needs of People with Dementia
|pdfUrl=https://ceur-ws.org/Vol-499/paper02-Astell.pdf
|volume=Vol-499
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==REAFF - A Framework for Developing Technology to Address the Needs of People with Dementia==
https://ceur-ws.org/Vol-499/paper02-Astell.pdf
REAFF - A framework for developing technology to address the
needs of people with dementia
Arlene J. Astell,
School of Psychology, University of St. Andrews, Fife, Scotland, KY16 9JP
+44 1334 462056; aja3@st-and.ac.uk
Abstract impacts on a person’s ability to carry out
As the number of older people with a everyday activities and participate in
diagnosis of dementia continues to grow, social situations. As dementia advances,
the potential for developing people find themselves increasingly in
technological solutions to the problems need of support and assistance in all
they face is increasingly being aspects of their lives.
recognised. This paper describes the Living with dementia presents a range of
REAFF framework, a set of principles to challenges ripe for creative applications
guide the development of technology to of technology. These tend to fall broadly
support people with dementia. The into addressing the safety, security and
framework has evolved from experience social challenges of living with dementia
developing computerised technology to (Astell, 2005). Safety issues are those
address psychosocial needs but the relating to aspects of dementia that can
principles have broader application put people at risk such as going out and
across all areas of technological getting lost. Security refers to the
development to support people living challenges of keeping people functioning
with a diagnosis of dementia. in their own homes for as long as
possible. Social deals with the aspects of
1. Introduction a person’s life concerned with engaging
Dementia is an irreversible, progressive with other people and participating in
neurological condition that gradually enjoyable and meaningful activities
interferes with all aspects of a person’s (Astell, 2006).
life. Alzheimer’s disease (AD) is the Some of the developments to date have
most common cause of dementia, been technology-lead, such as the
accounting for approximately 42% of application of GPS systems as personal
cases (Brunnström, Gustafson, Passant locators and tracking devices for people
& Englund, 2009) although vascular with dementia and other cognitive
dementia (VaD; 23.7%) and mixed AD impairments (e.g. Miskelly, 2005).
and VaD (21.6%) are also common However, there is also potential to
(Brunnström, et al., 2009). The greatest develop tailored solutions for people
risk factor for developing any sort of with dementia that reflect the patterns of
dementia is age (Alzheimer’s spared and impaired processes they
Association, 2009). experience. The REAFF framework has
The early clinical signs of dementia due been devised to inform and support the
to AD are characterised by memory development of technology to address
problems and failure to learn new the broad range of challenges faced by
information (McKhann, et al., 1984). people with dementia. It emerged from
Over time, all aspects of cognitive experience developing technological
function are affected which in turn solutions to meet social and
5
psychological needs of people with concentration all likely to deteriorate;
dementia. However, the principles have (ii) social – cognitive changes impact on
broad application across to all areas of a person’s ability to initiate and maintain
technological development for people conversations and interactions with other
with dementia. people. However, their need and desire
for these social contacts is undiminished
2. REAFF Framework as dementia progresses (Astell & Ellis,
This framework has developed over a 2006); (iii) environmental – this refers to
number of years and contains four the needs of people with dementia for
principles for guiding development of active participation in their environment
technological solutions to address the as opposed to being passive recipients of
needs of people with dementia (Table 1). things being ‘done for’ and often ‘done
These are Responding, Enabling, to’ them (Astell, 2006).
Augmenting and Failure-free (REAFF). Technological solutions can address the
needs of people with dementia in one
Table 1. The REAFF framework cognitive domain for example Memojog
Principle Definition (Szymkowiak, et al., 2003), which
Responding Technological solutions provides prompts to jog a person’s
must be responsive to the memory. Alternately, solutions can be
needs of people with developed to meet people’s needs across
dementia a range of cognitive or other functions,
Enabling Technological solutions such as the Picture Gramophone (Päivi,
must enhance the life of et al., 2004), which was developed to
the person with dementia support reminiscence and promote social
and not disable them in interaction through music.
any way It is important to be aware that
Augmenting Technological solutions developing technology to meet the needs
must build on and extend of people with dementia must be
the retained abilities and balanced with the needs of family and
skills of people with professional caregivers, which may not
dementia be the same, either as each other or as
Failure-free Technological solutions people with dementia’s. For example,
must be intuitive and family caregivers prioritised the safety
accessible and not of their relative and their own peace of
undermine the confidence mind in respect of endorsing the use of
of a person with dementia GPS to track people with dementia
(Landau, Werner, Auslander, Shoval &
2.1. Responding Heinik, 2009). By contrast professional
The principle goal of technological caregivers were less supportive of the
solutions should be to respond to the use of GPS technology and expressed
needs of people with a diagnosis of more concerns about the autonomy of
dementia. Their needs fall into the the person with dementia (Landau, et al.,
following domains: (i) cognitive – 2009). Additionally, people with
memory is the primary aspect of dementia may have different views again
cognition affected, with other domains such as concerns about invasion of their
such as naming, attention and privacy (Miskelly, 2005).
6
2.2. Enabling not disable people with dementia, which
Enabling embodies the principle that is not without its problems. For example,
interventions should “help people with electronic tagging has been used in a
dementia maintain their independence similar way to GPS to locate people with
and dignity” (Alzheimer’s Society (AS), dementia when they go out and prevent
2004). This means that enabling people them from getting lost.
with dementia to do as much as possible Bail (2003) argued that this approach
for as long as possible should be at the provided “more freedom of movement
forefront of technological developments. and personhood” (Bail, 2003, p281) for
Unfortunately many solutions and people with dementia who would
interventions offered to people with otherwise be kept behind locked doors.
dementia are disabling rather than However, objections to tagging include
enabling. For example, disconnecting the how able people with dementia are to
gas is often applied as a solution to a agree to the tagging; how the benefit to
person with dementia forgetting to light people with dementia is evaluated; and
the gas on the stove (REF). However, the weight given to caregiver’s views
the application of a cooker usage about the benefits of tagging (Hughes &
monitor can support people with Louwe, 2002). The complexity of
dementia to keep using the stove to balancing these positions is highlighted
prepare food for themselves (Gibbs, by two position papers produced by the
Adlam, Faulkner & Orpwood, 2003). Alzheimer’s Society, where in 2004 they
“Excess disability” (Kahn, 1965; cited in were broadly opposed to tagging but in
Brody, Kleban, Lawton & Silverman, 2007 came out in support of tagging re-
1971) is also a major problem for people branded as “safe walking technology”.
with dementia. This refers to a mismatch
between a person’s actual impairment 2.3. Augmenting
and the level of incapacity they Technological solutions for people with
experience. People with dementia are dementia should aim to minimise the
excessively disabled by the environment cognitive problems that characterise
as caregivers often find it easier to do dementia and maximise people’s
something themselves than to support retained skills. Thus technological
the person with dementia to do it, e.g. solutions should be a form of cognitive
getting dressed (Rogers, et al., 2000). prosthetics, which are “computational
Additionally, caregivers may view systems that leverage and extend human
people with dementia as incapable and intellectual capacities… systems that fit
therefore underestimate what they are the human and machine components
still able to do (Sabat, 2006). together in ways that synergistically
Yet, if people are supported and exploit their respective strengths and
prompted appropriately, they can mitigate their respective weaknesses”
continue to carry out activities and (Ford, 2001). This principle requires a
maintain their independence as far as good understanding of the profile of
possible (Rogers, et al., 2000), which is cognitive changes experienced by people
why technological solutions must aim to with dementia to identify which ones to
be enabling. The challenge is therefore circumvent and which are available for
to provide technological solutions that exploitation in the development of
are responsive and enabling and that do technological solutions.
7
from a research programme creating
2.4. Failure-free computerised systems to meet the social
As stated above, people with dementia and psychological needs of people with
experience excess disability through dementia. The Computer Interactive
negative perceptions and expectations of Reminiscence and Conversation Aid
caregivers, both formal and informal. (CIRCA) project is an example of the
They are confronted on a daily basis work being carried out in this area and is
with multiple situations, such as described below to illustrate the four
shopping, taking medication, etc., in REAFF principles.
which they can fail due to their cognitive
impairments. It is therefore paramount 3. CIRCA
that interventions for people with Executive functions are those aspects of
dementia avoid “devaluing, invalidating cognition responsible for planning,
and dehumanizing” (Kitwood, 1990) initiating and monitoring activities.
them further. People with AD have an early problem
Technological solutions must therefore with executive function (Carlson, Xue,
aim to be as ‘failure-free’ or ‘user- Zhou & Fried, 2009), especially the
friendly’ as possible. That is they should working memory component, which
be intuitive and accessible for the users, makes it difficult for them to keep track
require minimal effort and not feel like a of the turns and contents of a
chore. To achieve this technology must conversation. Thus conversations
be designed to recognise and take between people with AD and caregivers
account of potential problems. For are very difficult.
example any technological solution CIRCA (Astell, et al., 2008) is an
designed to support people with interactive computer system designed to
dementia must not have a high memory facilitate communication between people
load to learn and operate as potential with dementia and caregivers. CIRCA
users will be disadvantaged from the contains a multimedia database of
outset by their reduced capacity for generic photographs, music and video
learning new information. clips to prompt and support conversation
Equally important, technological through reminiscence (Astell, et al.,
solutions must not feel like a test or 2004). CIRCA was developed to
evaluation of a person with dementia. minimise the working memory problems
Given the multiple daily failures people of people with dementia by not requiring
with dementia already experience, their them to keep track of the conversation –
confidence in their own abilities is easily whatever is on the screen is the current
undermined and should not be shaken topic of conversation. Equally, the
further by technology that is intended to CIRCA contents were designed to make
help. the most of the retained knowledge and
skills of people with dementia,
These four principles – Responding, especially in regard to their well-
Enabling, Augmenting and Failure-Free preserved memories from the past. The
- provide a touchstone for developing system uses a touch screen, does not
technological solutions to meet the involve a mouse or keyboard and
challenges of living with dementia. They requires no previous computing
have evolved over the past nine years experience (see Figure 1).
8
their environment. Enabling – CIRCA
supports people with dementia to
participate equally in interactions with
caregivers. Using CIRCA was judged by
caregivers to be an enjoyable activity for
both parties, as opposed to being viewed
as a caregiving task. Seeing people with
dementia in a different light also enabled
caregivers to revise their perceptions and
expectations about what the people they
care for are capable of (Astell, et al.,
2007), an important step in reducing the
excess disability experienced by people
Figure 1: CIRCA interface showing
with dementia. Augmenting – alongside
People & Events video
minimising the working memory
problems of people with dementia,
For people with dementia CIRCA
CIRCA was developed to maximise their
provides the opportunity to make
retained cognitive abilities, particularly
choices and engage as an equal partner
long-term memory and responsiveness to
in a one-to-one conversation with a
social interaction. The CIRCA contents
caregiver (Astell, et al., 2008). As
were selected to prompt reminiscence,
CIRCA requires no preparation or
which led to situations where people
practice, it is easy for caregivers to
with dementia were the experts on
conduct one-to-one or group sessions
certain topics (e.g. 1940’s movie stars)
with people with dementia. Evaluation
relative to young caregivers. Failure-
of CIRCA identified three major
free – CIRCA was developed to provide
outcomes for care staff: 1) staff saw the
a failure-free activity for people with
people with dementia in a new light; 2)
dementia. The use of generic contents
staff re-evaluated their perceptions and
avoids CIRCA seeming like a memory
expectations of their interactions with
test, as there are no right or wrong
people with dementia; and 3) using the
memories in response to the stimuli.
computer to run one-to-one sessions
Designing the interface to be easily
improved staff feelings of competence as
accessible for people with no previous
caregivers (Astell, et al., 2007).
computer experience enabled people
with dementia to use it successfully.
4. CIRCA and the REAFF framework
In conclusion the REAFF framework
The four principles of the REAFF
encompasses four simple, general
framework are illustrated by the
principles to guide the development of
development and evaluation of CIRCA
technological solutions to support people
as follows. Responding – CIRCA was
living with a diagnosis of dementia.
developed to address a specific cognitive
Their application should facilitate the
need, i.e. the working memory problem
production of sensitively designed
that people with AD-type dementia
person-centred technological solutions
experience that makes it difficult to hold
for people with dementia.
a conversation. However, CIRCA also
addresses people’s needs for social
Acknowledgements. This work was
interaction and active participation in supported by grant number GR/R27013/01
9
from the EPSRC and would not have been Gerontology A: Biol Sci Med Sci, published
possible without the encouragement and online Jan 31st 2009.
participation of Alzheimer Scotland Dundee Ford, K. (2001). Institute of Human and Machine
Project and Dundee Social Work Cognition Celebrates its first decade.
http://www.cra.org/reports/labs/ihmc.html
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