In 2025 every fourth European will be older than 60 years. This number is immense and will continuously grow in size in the upcoming years. Nowadays, senescence poses a threat to the already limited capacities of medical health care systems and economically exhausted governments. Especially age-related, long-term chronic conditions are both psychologically burdening and financially challenging for the patient and the caregivers. Since the number of cases are expected to double every 20 years, dementia, one of the most common chronic conditions, is going to play a significant role in the caregiving management of the 21st century worldwide.
Innovative technology may have the potential to mind the gap between exploding costs of long-term caregiving and assisted living at home of a dementia patient. While following a user-centered design methodology, this paper presents the development of an interactive system to support early stage dementia patients and their families. Each of the phases – analysis, design and evaluation – are described individually while keeping the central theme.
The project starts with a thorough literature study considering the fields of older adults affected with dementia, their technology affinity, their skills and a benchmark of availa-ble technical solutions and research projects around the scope. Exploratory interviews with 9 informal and 2 professional caregivers, respectively totalling 213 and 80 minutes of audio record, enhance and complement the theoretical research and outline a broad bandwidth of problems of dementia patients and their caregivers while living together and dealing with the disease.
The user research revealed that dementia patients are most of the time older adults with a late dementia diagnosis and multiple other age-related diseases. Furthermore, concealment of the disease due to the cognitive decline causes a loss of hobbies and social withdrawal. Technologically-wise, the television (TV) is the only device which is known and accepted in the dementia patients’ environment while the ability to use a phone – if existent – gets lost early.
Regarding the caregivers, the user research outlines major life changes when a demen-tia case appears. Struggling psychologically- and socially-wise in between their own responsibilities in life e.g., school, job, hobbies and friends challenge. Therefore, contin-uous stress and emotional difficulties in dealing with the new situation are observed. The fear of leaving the patient temporarily alone is one of the main causes of distress. Additionally in home caring environments, the research indicates that informal caregivers already organize their life around the patient by using classic tools such as phones, paper calendars and notes and rarely forget disease-related tasks or appointments.
The outcomes of the theoretical and qualitative user research shaped the design alter-natives which concluded in an interactive system for caregivers and relatives:
Since the current generation of older adults has practically no experience with IT tech-nology, the nearly impossible task to introduce an “alien” artefact to a dementia patient – e.g. a smart-phone – is circumvented by using the TV as a display. The TV offers lim-ited, but unexploited possibilities as a passive interface for supporting a dementia patient in cases of temporary lonesomeness. In broad, the general idea of the solution designed consists of the usage of the TV to display dynamic, customized and illustrated information in the house of the dementia patient in situations of temporary lonesome-ness.
The information displayed on the TV is defined by the caregivers in “mobileWAY” (mobile-where-are-you), a platform-independent application that enables caregivers to display easy and very simple information about:
> who they are (provided by her name and portrait)
> their whereabouts (illustrated by a picture of the place or activity they are occupied with)
> and the time remaining until the caregiver is back in the house of the patient (rep-resented with a dynamic time metaphor)
Organizational helps, even if secondary, are considered by offering multi-caregiver accessible calendars, to-do lists and a forum for exchanging information among themselves.
Follow-up usability tests with two dementia patients and four of their caregivers indicate patient-side-wise partial to full comprehensibility of the information displayed on the TV. Stimulation and memory support due to association and usage of real images of locations and persons of their individual environment is also observed. Caregiver-side-wise, usability tests revealed high effectiveness and efficiency in using mobileWAY controlla-ble from a mobile device, e.g. a tablet or a smartphone. Caregivers also reported that the solution would likely improve their life as well as the life of their dementia affected person.
Avoidance of introducing new hardware in the dementia patient’s home, little to non-existent acquisition costs of additional infrastructure and no training or other prerequisites of patients and caregivers are positive characteristics of the designed and tested solution. Moreover, the involvement of caregivers in the patient tests has been as a val-uable addition for the conduction of usability tests with dementia affected persons and is a side result of this work. By way of illustration, a high-fidelity (Hi-Fi) tablet interface set of mobileWAY has been created. A demonstrator video visualizing the possibilities of the system in a typical use case perfects this project.
Author: Philipp Jordan
Type: MSc thesis
Partner: Institut für Konstruktionstechnik und Technisches Design Universität Stuttgart