Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Aging between Participation and Simulation

This publication aims to initiate an interdisciplinary discourse on the ethical, legal, and social implications of socially assistive technologies in healthcare. It combines practically relevant insights and examples from current research and development with ethical analysis to uncover moral pitfalls at the intersection between the promotion of social participation and well-being, and risks that may diminish the achievement of these ends

Digital support for self-management and meaningful activities of people with mild dementia:Development, implementation and feasibility of a person-centred touch-screen intervention

This thesis reports on the research that was conducted to develop and pilot test a person-centred touchscreen-based program (FindMyApps intervention) that supports people with mild dementia and their informal carers in how to use a tablet and apps for self-management and meaningful activities. The program consists of the FindMyApps training for informal carers in supporting people with mild dementia in using a tablet and the FindMyApps selection tool designed to help people with mild dementia find apps for self-management and meaningful activities that fit their needs, wishes and abilities. The program was developed following the Medical Research Council (MRC) Framework for the design and evaluation of complex interventions and in co-creation with end users. The chapters of this thesis describe the first three phases of this framework i.e.: the preclinical or theoretical phase (0); the modelling phase (I) and the exploratory trial (II). The execution of an RCT (III), and further implementation (IV) in case the intervention proves effective, are beyond the scope of this thesis. In the first phase user needs studies were performed to identify user requirements for desired self-management and meaningful activities and to identify user-requirements related to the use of apps. Eight focus groups were performed in which people with mild cognitive impairment (MCI) or mild dementia (n=13) and informal carers (n=15) participated. We also conducted a literature review to explore which training interventions are most effective for people with mild dementia in (re)learning how to use technologies, including handheld touchscreen devices. An electronic search was conducted in the following databases: PubMed, APA PsycInfo (EBSCO) and CINAHL (EBSCO). In total 16 studies met the inclusion criteria. Our review contributed to the growing amount of promising evidence on the potential impact of Errorless learning training interventions for people with mild to moderate dementia in (re)learning how to use technology. Based on these results we developed the FindMyApps training. In the second phase of the framework we developed a first concept of the FindMyApps selection tool based on identified user requirements. To ensure its usability, the web-based tool was developed using a ‘user-participatory design’ involving the close collaboration of potential users, a development team (researchers, developers and designers) and an expert team (experts in person-centred dementia care and ICT). In three short iterative rounds – so called ‘sprints’ – the users (people with dementia (n=8) and (in)formal carers (n=10)) were invited to test whether the prototypes were in line with their needs, wishes and abilities. This generated important insights into user-interface aspects relating to (i) useful content and (ii) a user-friendly tool design. In the third phase we pilot tested the FindMyApps intervention by means of individual semi-structured interviews and a pilot randomized controlled exploratory trial. Twenty people with mild dementia and informal carer dyads were randomly assigned to the FindMyApps group (n=10), receiving either the FindMyApps training and selection tool, or a control condition (n=10), receiving only a short tablet training. Pre- and post-test measurements at a three month follow-up, consisted of questionnaires and post-test semi-structured interviews. Based on the qualitative results and the effect sizes on the outcomes measured in this study, we consider that the FindMyApps intervention has the potential to positively influence the self-management and engagement in meaningful activities in people with dementia. Future studies with a larger sample should better indicate whether this expectation can be confirmed. The intervention will be further improved and tested in a larger pilot-RCT study and its effectiveness subsequently evaluated in a definite RCT

Aging between Participation and Simulation

This publication aims to initiate an interdisciplinary discourse on the ethical, legal, and social implications of socially assistive technologies in healthcare. It combines practically relevant insights and examples from current research and development with ethical analysis to uncover moral pitfalls at the intersection between the promotion of social participation and well-being, and risks that may diminish the achievement of these ends

Acceptance of ambient assisted living (AAL) technologies among older Australians : a review of barriers in user experience

One of the great challenges facing Australian society is that of an ageing population. Amongst the issues involved in this drastic demographic change, the most significant aspect is the demand for older Australians to live independently at home. The development of Ambient Assisted Living (AAL) technologies aims to address this issue. The advancement of AAL applications have been done to support the users with their daily-life activities and health concerns by providing increased mobility, security, safety in emergencies, health-monitoring, improved lifestyle, and fall-detection through the use of sensors. However, the optimum uptake of these technologies among the end-users (the elderly Australians) still remains a big concern. Thus, there is an elevated need to understand the needs and preferences of the seniors in order to improve the acceptance of AAL applications. The aim of this study is to investigate the barriers and perceptions in the use of AAL applications amongst older Australians. Focus groups and quantitative surveys have been conducted to provide a detailed analysis of these impediments. The results show that there are different factors that restrict the use of these technologies along with the fact that elderly people have certain preferences when using them. An understanding of these factors has been gained and suggestions have been made to increase the acceptance of AAL devices. This work gives useful insights towards the design of AAL solutions according to user needs

Sustainable Technology and Elderly Life

The coming years will see an exponential increase in the proportion of elderly people in our society. This accelerated growth brings with it major challenges in relation to the sustainability of the system. There are different aspects where these changes will have a special incidence: health systems and their monitoring; the development of a framework in which the elderly can develop their daily lives satisfactorily; and in the design of intelligent cities adapted to the future sociodemographic profile. The discussion of the challenges faced, together with the current technological evolution, can show possible ways of meeting the challenges. There are different aspects where these changes will have a special incidence: health systems and their monitoring; the development of a framework in which the elderly can develop their daily lives satisfactorily; and in the design of intelligent cities adapted to the future sociodemographic profile. This special issue discusses various ways in which sustainable technologies can be applied to improve the lives of the elderly. Six articles on the subject are featured in this volume. From a systematic review of the literature to the development of gamification and health improvement projects. The articles present suggestive proposals for the improvement of the lives of the elderly. The volume is a resource of interest for the scientific community, since it shows different research gaps in the current state of the art. But it is also a document that can help social policy makers and people working in this domain to planning successful projects

Ageing and Technology: Perspectives from the Social Sciences

The booming increase of the senior population has become a social phenomenon and a challenge to our societies, and technological advances have undoubtedly contributed to improve the lives of elderly citizens in numerous aspects. In current debates on technology, however, the "human factor" is often largely ignored. The ageing individual is rather seen as a malfunctioning machine whose deficiencies must be diagnosed or as a set of limitations to be overcome by means of technological devices. This volume aims at focusing on the perspective of human beings deriving from the development and use of technology: this change of perspective - taking the human being and not technology first - may help us to become more sensitive to the ambivalences involved in the interaction between humans and technology, as well as to adapt technologies to the people that created the need for its existence, thus contributing to improve the quality of life of senior citizens

Intelligent technologies for the aging brain: opportunities and challenges

Intelligent computing is rapidly reshaping healthcare. In light of the global burden of population aging and neurological disorders, dementia and elderly care are among the healthcare sectors that are most likely to benefit from this technological revolution. Trends in artificial intelligence, robotics, ubiquitous computing, neurotechnology and other branches of biomedical engineering are progressively enabling novel opportunities for technology-enhanced care. These Intelligent Assistive Technologies (IATs) open the prospects of supporting older adults with neurocognitive disabilities, maintain their independence, reduce the burden on caregivers and delay the need for long-term care (1, 2). While technology develops fast, yet little knowledge is available to patients and health professionals about the current availability, applicability, and capability of existing IATs. This thesis proposes a state-of-the-art analysis of IATs in dementia and elderly care. Our findings indicate that advances in intelligent technology are resulting in a rapidly expanding number and variety of assistive solutions for older adults and people with neurocognitive disabilities. However, our analysis identifies a number of challenges that negatively affect the optimal deployment and uptake of IATs among target users and care institutions. These include design issues, sub-optimal approaches to product development, translational barriers between lab and clinics, lack of adequate validation and implementation, as well as data security and cyber-risk weaknesses. Additionally, in virtue of their technological novelty, intelligent technologies raise a number of Ethical, Legal and Social Implications (ELSI). Therefore, a significant portion of this thesis is devoted to providing an early ethical Technology Assessment (eTA) of intelligent technology, hence contributing to preparing the terrain for its safe and ethically responsible adoption. This assessment is primarily focused on intelligent technologies at the human-machine interface, as these applications enable an unprecedented exposure of the intimate dimension of individuals to the digital infosphere. Issues of privacy, integrity, equality, and dual-use were addressed at the level of stakeholder analysis, normative ethics and human-rights law. Finally, this thesis is aimed at providing evidence-based recommendations for guiding participatory and responsible development in intelligent technology, and delineating governance strategies that maximize the clinical benefits of IATs for the aging world, while minimizing unintended risks

Ageing and Technology

The booming increase of the senior population has become a social phenomenon and a challenge to our societies, and technological advances have undoubtedly contributed to improve the lives of elderly citizens in numerous aspects. In current debates on technology, however, the »human factor« is often largely ignored. The ageing individual is rather seen as a malfunctioning machine whose deficiencies must be diagnosed or as a set of limitations to be overcome by means of technological devices. This volume aims at focusing on the perspective of human beings deriving from the development and use of technology: this change of perspective – taking the human being and not technology first – may help us to become more sensitive to the ambivalences involved in the interaction between humans and technology, as well as to adapt technologies to the people that created the need for its existence, thus contributing to improve the quality of life of senior citizens