Designing for and with vulnerable people: The Dem@Care "toolbox" approach

We describe the challenge set to us within the Dem@Care project, of designing a multi-component system to support safety, enablement, and diagnosis for older adults with dementia. Specifically we discuss the system as it relates to home-based enablement. Person-centred care is the gold standard in dementia care, which we incorporate into technology design by engaging in a user-led, participatory approach. The result of our considerations is the Dem@Care “toolbox”, a solution which addresses the challenge of providing home-based, person-centred care and enablement for older adults with dementia, utilising sensor technologies. The current text describes the toolbox and the terms of its future deployment

Dementia ambient care: a holistic approach to the management of dementia in multiple care settings

Assistive technologies that continuously monitor the person with dementia’s behavioural, cognitive, and emotional state facilitate more objective means of assessing, monitoring, and supporting the individual than that provided by traditional questionnaires. The “Dementia Ambient Care” (Dem@Care) EU-FP7-funded project investigated the use of multiple wearable (actigraphy, 2D/3D cameras, microphones) and ambient (visual and infrared cameras, sleep) sensors for the recording of daily activities, lifestyle patterns, emotions, and speech, to develop a novel approach to the holistic management of dementia, in multiple care settings. This paper presents findings from the use of Dem@Care for remote monitoring and support in the home of the person with mild dementia, and for the clinical assessment and management of Behavioural and Psychological Symptoms of Dementia (BPSD) for people in more advanced stages in a residential care setting. Four ‘home’ participant cases will be discussed; two in Greece and two in Ireland. An intervention study will also be presented comprising of residents from three specialist dementia care units in northern Sweden; two in the experimental group and one in the control group. In each setting, sensor data were analysed using state-of-the-art knowledge-driven interpretation techniques based on Semantic Web technologies. Patterns of sleep, physical activity, daily living activities, and stress/anxiety over time were identified. Through specific user interfaces, clinicians and formal caregivers were able to monitor the sensor recordings and the relevant analysis in order to propose new, or to adapt older, supports and interventions. Results indicate that such sensor-based information can have a positive impact on the assessment of BPSD in residential care settings. While at home, the person with dementia and their family caregiver could monitor summaries of their own activities, and read personalized messages, prompts and advice, thus providing timely support and enabling independent living for longer

Co-designing smart home technology with people with dementia or Parkinson's disease

Involving users is crucial to designing technology successfully, especially for vulnerable users in health and social care, yet detailed descriptions and critical reflections on the co-design process, techniques and methods are rare. This paper introduces the PERCEPT (PERrsona-CEntred Participatory Technology) approach for the co-design process and we analyse and discuss the lessons learned for each step in this process. We applied PERCEPT in a project to develop a smart home toolset that will allow a person living with early stage dementia or Parkinson's to plan, monitor and self-manage his or her life and well-being more effectively. We present a set of personas which were co-created with people and applied throughout the project in the co-design process. The approach presented in this paper will enable researchers and designers to better engage with target user groups in co-design and point to considerations to be made at each step for vulnerable users

Troubling Vulnerability: Designing with LGBT Young People's Ambivalence Towards Hate Crime Reporting

HCI is increasingly working with ?vulnerable? people yet there is a danger that the label of vulnerability can alienate and stigmatize the people such work aims to support. We report our study investigating the application of interaction design to increase rates of hate crime reporting amongst Lesbian, Gay, Bisexual and Transgender young people. During design-led workshops participants expressed ambivalence towards reporting. While recognizing their exposure to hate crime they simultaneously rejected ascription as victim as implied in the act of reporting. We used visual communication design to depict the young people?s ambivalent identities and contribute insights on how these fail and succeed to account for the intersectional, fluid and emergent nature of LGBT identities through the design research process. We argue that by producing ambiguous designed texts, alongside conventional qualitative data, we ?trouble? our design research narratives as a tactic to disrupt static and reductive understandings of vulnerability within HCI

Older people and online social interactions

Dr Shailey Minocha (The Open University, UK) will introduce a current project at The Open University (http://crc.open.ac.uk/Projects/OlderPeople-BeingOnline) in collaboration with Age UK Milton Keynes, Cordia and JISC TechDis. The project involves investigating the role of on-line social interactions in supporting people aged 65 or over to avoid or overcome social isolation, and to maintain and develop social connectedness. These on-line social interactions may be via email or Skype, or participating in on-line communities such as on Flickr, Facebook, Twitter and YouTube

How to and how much? Teaching ethics in an interaction design course

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Visibility of wearable sensors as measured using eye tracking glasses

Sensor technologies can enable independent living for people with dementia by monitoring their behaviour and identifying points where support may be required. Wearable sensors can provide such support but may constitute a source of stigma for the user if they are perceived as visible and therefore obtrusive. This paper presents an empirical investigation exploring the extent to which wearable sensors are perceived as visible. 23 Participants wore eye tracking glasses, which superimposed the location of their gaze onto video data of their panorama. Participants were led to believe that the research entailed a subjective evaluation of the eye tracking glasses. A researcher wore one of two wearable sensors during the evaluation enabling us to measure the extent to which participants fixated on the sensor during a one-on-one meeting. Results are presented on the general visibility and potential fixations on two wearable sensors, a wrist-worn actigraph and a lifelogging camera, during normal conversation between two people

Artificially Intelligent Technology for the Margins: A Multidisciplinary Design Agenda

There has been increasing interest in socially just use of Artificial Intelligence (AI) and Machine Learning (ML) in the development of technology that may be extended to marginalized people. However, the exploration of such technologies entails the development of an understanding of how they may increase and/or counter marginalization. The use of AI/ML algorithms can lead to several challenges, such as privacy and security concerns, biases, unfairness, and lack of cultural awareness, which especially affect marginalized people. This workshop will provide a forum to share experiences and challenges of developing AI/ML health and social wellbeing technologies with/for marginalized people and will work towards developing design methods to engage in the re-envisioning of AI/ML technologies for and with marginalized people. In doing so we will create cross-research area dialogues and collaborations. These discussions build a basis to (1) explore potential tools to support designing AI/ML systems with marginalized people, and (2) develop a design agenda for future research and AI/ML technology for and with marginalized people

Conducting Interviews with Elderly Informants for the Purposes of Educational Ethnography: Selected Aspects of Gerontological Fieldwork

The article presents the problem of conducting interviews for research and educational purposes with elderly people. It is not the purpose of the article to analyze the process of collecting interviews for clinical purposes in medical sciences. The article refers only to the epistemological issues in social sciences. The importance of proper interviewing elderly people is related to the planning of formal, informal or nonformal educational support for them (Kargul 2001) or on the other hand, for the purpose of data collection in qualitative research such as educational ethnography. In both cases, pedagogues should have deep knowledge about both the interview performance and the specificity of conducting interviews with the elderly informants, with respect and knowledge about the state of functioning of their health, cognitive skills etc. It is also particularly worth considering the problem of collecting data with informants having dementia or mental illnesses or being in need of particular sensitivity from the researchers. The article introduces the problem of educational needs of people in late adulthood, synthesizes the characteristics of elderly people as informants, taking into account their cognitive performance, health-related requirements or chronic diseases. In addition, the content includes procedural recommendations for the practice of data collection with informants in late adulthood (Tokaj 2005; Talarska & Wieczorowska-Tobis 2012) – after 60-65 years of age