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 Department. accessed 20th May 2009 Gibbs, C., Adlam, T., Faulkner, R., & Orpwood, References R. (2003). 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