Dementia ambient care: multi-sensor support to enable independent home-based living for people with dementia

The quality of life of the person with dementia is often impacted by the loss of autonomy and independence that can arise during dementia progression. Ambient assistive technologies represent a way of enabling independence and facilitating “ageing in place”, by supporting the health, lifestyle, and safety of the person with dementia in an unobtrusive manner. Dem@Care is a European FP7 funded project, which is using ambient and wearable sensors to maintain independent home-based living for as long as possible. We have identified five frequently problematic areas for the person with dementia that can be supported by technology: Sleep, Activities of Daily Living, Physical Activity, Social Interaction, and Mood. In Dem@Care, a clinical assessment is carried out with the person with dementia and their family to identify their unique needs in each of the 5 areas. An individualised sensor “toolbox” is tailored and discussed with the individual and their family, and an acceptable and useful system is configured and deployed. Over time, information gathered by sensors is used to provide feedback to identify changes in patterns of behaviour that may indicate deterioration, improvement, stasis, or the risk of future deterioration, and to increase awareness of behaviours that are detrimental to health and well-being. We report relevant guiding principles from the literature, and findings from the first Dem@Care pilot evaluation, regarding user-centred design, individualization, ethics, and the acceptability and usability of current Dem@Care sensors. We present results from the monitoring of sleep, physical activity, and daily-living activities and following promising initial results, we are expanding data collection to incorporate additional sensors and new participants with the expectation that we can demonstrate the ability of the Dem@Care system to enable persons with dementia to remain independent and living in their own homes for longer

Dementia ambient care: ethical issues arising from the use of a home-based multi-sensor support system

Background: With the worldwide increase in dementia prevalence acceptable cost-effective home-based solutions are needed to support people with dementia (PwD) living in the community and to delay institutionalisation. Ambient assistive technologies represent a way of enabling independence and facilitating “ageing in place”, by supporting the health, lifestyle, and safety of PwD in an unobtrusive manner. However, ethical issues associated with their use remain under-reported. Methods: Dem@Care is an FP7 project that uses ambient and wearable sensors to support physical activity, sleep, activities of daily living, social interaction, and mood in PwD. It uses a multiple case study design with purposive sampling of people with early stage dementia. An individualised sensor “toolbox” and intervention strategy is developed for participants based on a clinical assessment of their needs. Sensor data is aggregated over time to identify changes in patterns of behaviour that could signify improvement, stasis, or deterioration of function. Results: Our first two case studies raised important ethical issues associated with sensor use. Difficulties using the technologies resulted in heightened anxiety for the PwD and their carer. Sensor ‘privacy’ buttons were often forgotten resulting in image capture that might not have been intended and was potentially embarrassing to the PwD, and ambient video recording could not be deployed given the lack of an acceptable solution to obtaining third party consent. Conclusions: Although potentially beneficial to PwD, the ethical issues associated with the use of ambient assistive technologies require further discussion given the vulnerability of this population

A qualitative investigation into family carers’ experiences of living with/caring for a person with young-onset dementia.

Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia

Recognition of activities of daily living in natural “at home” scenario for assessment of Alzheimer's disease patients

In this paper we tackle the problem of Instrumental Activities of Daily Living (IADLs) recognition from wearable videos in a Home Clinical scenario. The aim of this research is to provide an accessible and yet detailed video-based navigation interface of patients with dementia/Alzheimer disease to doctors and caregivers. A joint work between a memory clinic and computer vision scientists enabled studying real-case life scenarios of a dyad couple consisting of a caregiver and patient with Alzheimer. As a result of this collaboration, a new @Home, real-life video dataset was recorded, from which a truly relevant taxonomy of activities was extracted. Following a state of the art Activity Recognition framework we further studied and assessed these IADLs in term of recognition performances with different calibration approaches

Ethical challenges associated with technology use with people with dementia

Background: The prevalence of dementia is expected to increase as our population ages. People with Dementia (PwD) and their carers have expressed the desire to remain living at home and integrated with their communities for as long as possible. Ambient Assistive Living (AAL) and Lifelog technologies can support this wish, but they bring with them serious ethical issues that need to be addressed. Methods: The literature associated with AAL and Lifelog technologies was reviewed. These findings were combined with the results of the three studies presented in this symposium in order to identify the key ethical issues associated with the use of these technologies and the current state of the scholarly debate surrounding these issues. Results: The potential benefits and the specific limitations of using AAL and Lifelog technologies with PwD will be explored, in particular in home-based situations. We will consider their potential mis-use as surveillance tools and the possible exploitation of the data captured during their use. Finally, the challenge of gaining informed consent, including third party consent will be discussed, both in terms of proposed solutions and in light of the current legal framework in Ireland. Conclusions: Using technology as a means of preserving autonomy, promoting independence, and facilitating at-home living for longer is likely to increase over the coming years. Providing clear examples of the ethical issues that can arise with the use of these technologies, and the recommendations for alleviating these ethical challenges will, help to protect a vulnerable population

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

Shaping technologies for older adults with and without dementia: Reflections on ethics and preferences

As a result of several years of European funding, progressive introduction of assistive technologies in our society has provided many researchers and companies with opportunities to develop new information and communication technologies aimed at overcoming the digital divide of those at a greater risk of being left behind, as can be the case with healthy older people and those developing cognitive decline and dementia. Moreover, in recent years, when considering how information and communication technologies have been integrated into older people’s lives, and how technology has influenced these individuals, doubts remain regarding whether technologies really fulfil older users’ needs and wishes and whether technologies developed specifically for older users necessarily protect and consider main ethical values. In this article, we address the relevance of privacy, vulnerability and preservation of autonomy as key factors when involving older individuals as target users for information and communication technology research and development. We provide explanatory examples on ethical issues involved in the particular case of developing different types of information and communication technology for older people (from robotics to serious games), what previously performed research tells us about older adults’ preferences and wishes for information and communication technology and what steps should be taken into consideration in the near future