کمک های شناختی برای حمایت از ادغام اجتماعی در بیماری آلزایمر

Social integration plays a key role in the maintenance of quality of life and health status of people with dementia and their care-givers. Here, we outline a general concept for cognitive assistance and argue for the specific importance of technical support for outdoor mobility to preserve opportunities for social contacts and activities. Based on commercially available devices and systems described in the literature, we provide a conceptual framework for mobility assistance which integrates both technical features and user requirements. The technical development of assistive systems so far was mainly concentrated on static user models. In order to account for the progressive nature of dementia due to Alzheimer's disease, more dynamic approaches need to be pursued to enable optimal assistive effects.

The syndrome of dementia is associated with a decline in memory and other cognitive functions. Alzheimer's Disease International (ADI) (2008) reports an estimated total of 30 million people with dementia worldwide, and 4.6 million incident cases per year. According to Alzheimer's Association (2012), in 60–80% the cause for dementia is Alzheimer's disease (AD). The disease leads to progressive cognitive decline, dependence on care and finally to the death of the affected person. The disease poses an enormous burden both on the patient and his care-givers, but also on the health care system. While a cure for AD does not yet exist, knowledge about clinical manifestations and biology has increased (McKhann et al., 2011), enabling an earlier and more reliable diagnosis. This creates room for a spectrum of interventions, aiming to delay disease progression, including pharmacological treatments as well as non-pharmacological approaches, such as art-, movement-, or reminiscence therapy. Next to directly treating the symptoms, measures are adopted to enable patients suffering from AD dementia to lead a socially integrated life despite of emerging symptoms. This goal can be achieved by technical assistance to compensate for disabilities. In the following sections, we will define social integration for people with dementia, and argue for the importance of maintained social activities in dementia. We will then describe available technical solutions to support spatial and social mobility and provide a framework how these solutions can be integrated into an overall concept of preserved social participation for people with dementia. Thus, our approach aims to bring together an engineering view on providing technical solutions with a user-driven perspective on needs and requirements for sustainable and efficient support in social activities. 1.1. Benefit of social integration Being connected with other people is a substantial factor for perceived quality of live. Social relationships provide emotional support and motivate engagement in different activities, both physical and intellectual. But often elderly people lose social relationships and have reduced potential for preserving existing and making new contacts. To keep up independence, socializing and contacts, a person needs certain cognitive capacities: comprehension of social situations and navigation in complex systems. These capacities are gradually lost in people with dementia. Several studies underscore the importance of social contacts for the cognitive health in elderly people. Reviewing seven international studies, Fratiglioni et al. (2004) found evidence that an active and socially integrated lifestyle in late live protects against dementia. Ertel et al. (2008) conducted a longitudinal representative study of the US elderly population, comprising data from more than 16 thousand people. Their results indicate that social integration may help to preserve memory by means of several mechanisms. One factor could be the reduction of cerebrovascular risk factors. Social ties may have an effect on behavioral norms such as taking care of oneself. Another possible mechanism refers to cognitive aspects of social interaction. Social interaction entails cognitive challenges, which enhance cognitive reserves to compensate for progressive brain lesions. In addition, having contacts with friends and loved ones provides a greater sense of purpose and emotional validation that carries a neurohormonal benefit. These studies had investigated the protective effect of social integration on elderly without dementia. Oppikofer et al. (2002) explored if regular visits of volunteers have a positive effect on the well-being and health status of demented (MMS 5-25) residents with low social contact. The study confirmed the positive effect. Also they found evidence that regular visits attenuated the negative effects of mental deterioration on the resident's mental ability. Interestingly, the effect was detectable after an intervention period of only 10 weeks. Oppikofer et al. (2002) hypothesized that this effect can be generalized on other target groups. In a meta-analysis across 15 trials employing different types of cognitive stimulation, such as discussing about past and present events, word games, puzzles, music, baking or indoor gardening in different settings, like hospital, home- or day-care, cognitive stimulation had a significant positive effect on rates of cognitive decline and improved communication and social interaction, quality of live and well-being in people with dementia (Woods et al., 2012). Technical systems can support social interaction and cognitive stimulation. In this way, technology helps to strengthen social ties and reduce the decline of cognitive abilities. These techniques, however, should follow one important guiding principle: technological developments for elderly at risk for or already afflicted with dementia should be used to enhance the potential for social contacts, not as a substitute for human interaction. 1.2. Social inclusion According to Schütte (2012), social inclusion can be described by the modes of societal affiliation, being interdependence and participation. Referencing further literature, the author outlines interdependence by the principle of give-and-take. Individuals receive goods and services by the society and give something back, for example by going to work. Impairment can hinder an individual to give something back, leading to a one-sided relation between individual and society and thereby to exclusion. Participation describes the way an individual can receive something by the society in a material, cultural or institutional manner. An individuals' participation could also be limited through impairments, which may prevent him or her from reaching institutions, accessing public buildings or making use of leisure facilities. Inclusion and exclusion are products of an individuals’ interaction with his/her social environment. Illness or impairment disturbs the ability to interact with the environment and confines possibilities for integration and self-actualization, leading to exclusion. The degree to which disorders impair inclusion depends on both individual and social factors. As one key resource, the health system helps to delay or attenuate exclusion or to limit it temporarily by healing or alleviating symptoms (Hartmann, 2010). The term inclusion describes the comprehension that impaired people have rights to take part in social activities based on their own decisions (Graumann, 2012). A stable network of positive social relationships is essential for social inclusion of elderly people, especially relationships that existed before the impairment arose. Thus, technical assistance to keep up spatial and social mobility can support social integration and inclusion (Theobald, 2008). According to Morgan et al. (2007) only a small number of studies addresses the interdependence between mental health problems and social exclusion. This limited evidence suggests that social exclusion has more explanatory power for mental health problems than poverty or other material disadvantages or illness. In turn, the behavioral effects of mental health problems cause exclusion by other people and institutions (Morgan et al., 2007). There are many environmental conditions which increase exclusion due to impaired cognitive capacities. For example, a lot of people are using public transport-systems to live independently and socialize. To be socially included, people have to be able to understand and navigate within this cognitively demanding systems. But people with cognitive impairments are no more able to make use of the transportation systems without help (Carmien et al., 2005). Thus, technical assistance to aid the use of this and other systems can help to overcome some barriers of inclusion.

An adaptive system has the potential to go along with its user, who is deteriorating due to the disease, for an extended period of time, starting possibly in an early stage, where he can still familiarize with the device. Patients with dementia experience problems in using everyday technology already in mild stages (Nygård and Starkhammar, 2007), but are nevertheless able to learn how to operate a new device like a mobile phone (Lekeu, 2002). Therefore a system that adapts to the users' abilities and is introduced early in the diseases progress may be more easily accepted than specialized devices, that have to be exchanged in each stage the user passes through. Next to user acceptance, being essential for system-application, the aim of adaption should be to maximize the assistive effect in the face of decreasing informational throughput, as described in Section 3. The amount of information that goes into the system depends to a great extent on the users direct input, like choosing a target to navigate to, selecting a guidance mode or changing any settings. The more alternatives are available, the more information has to be provided by the user. Maximizing the input, regarding the growing disability of the user, means therefore to exploit other sources of information. Possible is the usage of a priori knowledge, entered into the system at initialization by a caregiver. The data could comprise rather static information, e.g. about usually visited locations, emergency contacts and user preferences. Mobile internet may provide up to date information, for example about public transportation schedules or interesting events to visit. Additional knowledge can be gained by sensors, which are usually integrated into today's smartphones. Those comprise acceleration sensors, gyroscopes and sensors for the earth magnetic field. Taken together, these can be applied to measure the devices orientation in space, as well as direction and extend of body movements. On a higher level even the type of movements can be classified (Bao and Intille, 2004), for example walking, running, cycling or driving. These sources of information allow to present a subset of alternatives to the user with a high possibility to match his wish in a specific situation. Further improvement can be achieved by prioritizing the elements of the subset by significance, especially highlighting more probable targets. This does Opportunity Knocks, which uses learned significant locations and frequent sequences of goals as well as transportation mode and location ( Patterson et al., 2004, p. 440) to infer the current five most probable goals. Recognizing the users target opens up another important possibility of maximizing informational input. With the progression of dementia, the person could simply forget to use the device and would therefore not benefit from the simplified interface. Learning routines and recognizing activities enable an ATC to actively prompt the user, suggesting goals he could want to pursue. When the assistance system is fed with enough information to parameterize the abstract problem model to the specific situation, a solution to the problem is derived and has to be transmitted to the person with AD in a way that maximizes the understood amount of information. If the complete solution description is too complex to be understood properly, it should be decomposed into comprehensible chunks, separately transmitted to the person. The transmission of information could conceptually use each human sense as communication channel, while visual, auditive and haptic senses may be most commonly supported by today's technical devices. Here the persons health state should be taken into account, as senses often are affected directly by AD, like visual–spatial perception (Alzheimer's Association, 2012), or are impaired due to comorbidity. As various combinations of disabilities can be expected, assistive technology for the elderly should not be too much custom-tailored during development, but should have many different modes of operation available, selected then to meet the needs of a specific individual when deployed. Each atomic piece of information has to be coded using a token that can be transmitted by a channel and understood by the person with dementia. Understanding an abstract token is a higher-level cognitive function that is likely limited in AD, therefore the tokens should be designed unambiguous and if possible, adjusted to the situation. For example, a solution for a navigation problem could be calculated and be represented by a sequence of routes that link the current position with the target. The complete solution is then decomposed into single directions, presented to the user one at a time. The information can be transmitted visually by the display and auditory using the speaker. To code the information for the visual channel, a map and an arrow pointing in the direction could be displayed, or an arrow embedded into a photograph of the current crossing (Liu, 2010), in order to reduce the level of abstraction. The auditory channel transports a spoken command, like “Now go left”. As the same simple information is transmitted concurrently on two channels, the message will most likely be understood correctly. A variant of user guidance that efforts nearly no understanding is presented by Morris et al. (2003a), where a haptic interface is implemented using a robotic walker that is able to actively steer into the right direction. The principle of a minimal set of informational chunks coded in a way easy to grasp also applies to the design of the interface, as the device has to outline its functions and settings and therefore communicates with the user by its layout. In spite of adopting measures to maximize the informational throughput, the time will likely come, when the person is no longer able to perform a task, even with assistance. Increasing erroneous behavior when using for example LaCasa (Hoey et al., 2011 and Hoey et al., 2012) would effect in increased prompting by the system. At some time, a switch to another type of task assistance will be necessary, which affords a caregiver to take action. Such a switch will be a decisive turning point for the user, who might expect the usual system behavior, even if not as hard as substituting the complete device. Further development could aim at implementing system actions that will not directly prompt the user, but change the current task for example from navigating to a friend to guidance back to home; or change assistive prompts, for example from guidance to a call for help, if the user repeatedly fails. The seamless adaption requires both, a model for the effects of disease progression on the users abilities and a model for mapping those abilities on supportable tasks and assistive actions. The overall aim of development referred to Fig. 2 would be a single device embodying all classes of mobile assistance systems, substituting the single-colored boxes with a color gradient as in the head line, removing the border-lines in between the classes. The result is a device that provides the best technically feasible mobility assistance at every point in time, supporting the user to overcome some barriers to social inclusion and to stay socially integrated if wished-for.