Designing for therapies in dementia: ICT-enabled design practice for supporting non-pharmacological therapies in Alzheimer's disease

Alzheimer’s disease (AD) is incurable but it is treatable, both drug and non-drug treatments of its symptoms are now widely available. Best treatment efforts are known to be a synthesis of pharmacological and non-pharmacological therapies. Non-pharmacological therapies are consisting of physical and social components, which could be supported by designerly way of approach. While memory problems are the most characteristic symptom of this disease, many AD patients also mostly experience communication deficits. The loss of the ability to communicate thoughts and needs creates great difficulties for the patients to interact socially and sustain relationships with their surroundings and even with their therapists. Therefore, patients become frustrated at their loss of self-expression, and studies have demonstrated that impaired communication is strongly linked with the development of significant behavioural concerns. In other words, verbal communication loss noticeably intensifies the behavioural and psychological symptoms. Non-verbal behaviours on the other hand, such as looks, head nods, hand gestures, body posture or facial expression provide a lot of information about interpersonal attitudes, behavioural intentions, and emotional experiences. Therefore they play an important role in the regulation of interaction between individuals. Patients produce non-verbal signals and are responsive to others. Non-verbal communication is effective in Alzheimer's disease specifically in the late stages whereas the neuropsychological symptoms, also known as behavioural and psychological symptoms of dementia, could be determined and treated accordingly. This PhD research examines a new way of therapeutic support for Alzheimer’s patients and their caregivers. In this end, this study has three goals: (1) to assist Alzheimer's patients gaining more benefits from the non-pharmacological therapies or, even slowing down the progress of the disease symptoms, (2) to create a smart tool to enhance the communication between the therapist, carer and the patients and (3) to bridge the gap between design, ICT sensors and dementia therapies by proposing a theoretical background and finally to create a baseline for the further studies. Person centred design approach is adapted as the person is in the centre and his special needs and wellbeing is the matter. Accordingly, this research mind-set is set participatory, whereby caregivers and medical doctors are considered the experts and equal partners throughout the research process. Empathic observations and in-depth interviews are conducted with the caregivers and medical doctors. Their real life experiences are highlighted and the design recommendations and suggestions are listed. These design suggestions are expected to illuminate the upcoming researches in this area. On the other hand, in order to create a therapeutic support through design and technology, Smart Pillow practice is designed and developed. The concept idea is “communicating emotions through technology” that focuses on enhancing the patient’s emotional state and keeping these positive emotions as long as possible. This concept suggests that ICT sensors can be used to detect the negative emotions and on the selves technologies (such as lights, vibration and speaker) can be used to elevate patient’s emotional state. This Smart pillow aims to assist carers and therapists coping with neuropsychological symptoms (emotional and behavioural disturbances) of AD as well as suggests a new of communication by using nonverbal signals as a tool. To verify this hypothesis, the prototype of the pillow is developed and tested with the Alzheimer participants. The finding of the user testing showed that Smart Pillow practice has a promising effect on reducing the patient’s emotional and behavioural disturbances. Firstly, the findings are discussed to define the patient profile. In this end, it has been observed during the implementation that in the moderate stage (MMSE 13<n), the pillow create a improvement and severity levels of the symptoms are decreased by a 94% margin. Therefore, the result indicates that the Smart pillow practice is affective on the Alzheimer’s patients with MMSE scores 8 and higher. Finally the results indicate that pillow is highly effective on delusion, has moderate effect on irritability, agitation, and hallucination. It can be deduced that Smart pillow practice is effective on reducing the severity of Psychotic and affective Symptoms of the disease, while smart pillow increases the concentration of the patients, gathers the focus, soothing and additionally the pillow has activating effects on only the depression symptom. As a conclusion, this PhD dissertation has contributed to design field by adding a novel design concept and related product, which also be patented, as well as suggested design guidelines and the unique insights of the Alzheimer’s treatment doctors and Carers.