Informal carer role in the personalization of assistive solutions connected to aspirations of people with dementia

The increase in the elderly population over the last thirty years with consequent increase in the number of people living with dementia (PwD) has resulted in a research focus on improving quality-of-life and well-being beyond basic needs, to address psychosocial needs and to provide technological support for these. As part of a UK industry-led, publically supported, project Connect-ing Assistive Solutions to Aspirations (CASA), research is being conducted to inform the design of assistive technology packages that are aspiration-led. Focus groups were conducted with informal carers (family relatives) of persons with dementia to elicit views on technology use for increasing independence of PwD (with a carer living at home). The focus groups were analysed through thematic analysis and the results have been used to produce personas and scenarios for creation of demonstrator assisted living packages

Recognised, valued and supported: next steps for the Carers Strategy

"This strategy shows how government intends to support carers and will inform the outcomes and plans of health, social care, education and other services across government. In the next four sections we have set out why these areas are important and how focusing on them in local communities can make a positive difference for carers. We also identify the actions that government will take through this Parliament to support these priorities." - Page 7

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

Surveillance Technology in Dementia Care: Implicit Assumptions and Unresolved Tensions

This paper examines the concept of “Surveillance Technology [ST]” as it is used in ageing and dementia research but which suffers from poor definition. We attempt to clarify this imprecision by contextualizing a brief history of the development of ST and provide a summary of the research in this area. We contrast this with the responses provided by a public and patient involvement group of people living with a dementia diagnosis, or experience of supporting people with dementia. ST operates in multiple interacting ways, all of which need to be taken into account in research, public and policy debate. As a technology it is often seen as a way of assisting individuals and therefore classified as an Assistive Technology [AT]. However, the meaning of ST used in dementia care has pragmatic implications beyond the meeting of the needs for “safety and independence”; ideas which is often used to justify its use. We argue that there is need to interrogate the terms “Surveillance” and “Technology” more carefully if ST is to be considered as empowering for people with dementia. This tension is brought out in the accounts present in a group discussion on ST and its use. This paper argues that there needs to be an acknowledgement that the purposes of such technologies need to be regularly reviewed in order for society to keep up with the rapidly changing pace of technology and the changing needs of users

The case for investment in technology to manage the global costs of dementia

Worldwide growth in the number of people living with dementia will continue over the coming decades and is already putting pressure on health and care systems, both formal and informal, and on costs, both public and private. One response could be to make greater use of digital and other technologies to try to improve outcomes and contain costs. We were commissioned to examine the economic case for accelerated investment in technology that could, over time, deliver savings on the overall cost of care for people with dementia. Our short study included a rapid review of international evidence on effectiveness and cost-effectiveness of technology, consideration of the conditions for its successful adoption, and liaison with people from industry, government, academic, third sector and other sectors, and people with dementia and carers. We used modelling analyses to examine the economic case, using the UK as context. We then discussed the roles that state investment or action could play, perhaps to accelerate use of technology so as to deliver both wellbeing and economic benefits

Policy aspirations and practice in english telecare: a case study of story-lines and invisible work

Telecare – the use of technology to facilitate access to health and social care services – has risen in prominence over the last decade in the context of population ageing, a rise in long-term conditions and economic uncertainties. UK policy advocates adoption of telecare at scale, citing the promotion of independence and empowerment as benefits, but local implementation has been variable and the experiences of service users show a nuanced picture. This thesis investigates telecare policy, and its interpretation and implementation. It draws on an argumentative discourse analysis and material-semiotic approach to understand the experiences of telecare at a case study site. Narrative interviews and observations were undertaken, involving service provider and technology industry stakeholders and service users. Findings reveal four ‘story-lines’ of telecare policy but discrepancies between this discourse and local experiences. People are shown to engage with telecare to different extents, with the prevailing technology ‘script’ influencing non- or mis-use of devices. New work roles created by telecare sometimes appear ‘invisible’ or devalued. Furthermore, there is a lack of meaningful involvement of service users in decision-making. This study adds a theoretically-informed voice to the academic field and makes recommendations for future telecare policy, practice and research

Spotlight on : Council-managed personal budgets

As a major provider of services to older people, Age UK is interested in what research tells us is known to work. In this book we've asked experts to write jargon-free summaries of the latest evidence they have of the most effective practice. We hope it will inform and further the debate about how services can enhance the lives of older people today. In his foreword Lord Filkin says, 'The key question is how to make these years as healthy, happy and meaningful as possible and improve the quality of later life whenever we can. This sounds a heroic, even utopian, ambition but this excellent Age UK publication makes crucial points about how to realise this vision. It tells us that service designers and providers should listen to what older people say they want and value, and co-design services with them, rather than doing things to them. We should also need to recognise the huge diversity among older people, and make the best use of the evidence of what works best.' 'Services for Older People - What Works' is a valuable and accessible guide to current best practice in the care and support of older people. It makes essential reading for service providers, commissioners, and others who fund or deliver services for older people

Supporting older people and carers

As a major provider of services to older people, Age UK is interested in what research tells us is known to work. In this book we've asked experts to write jargon-free summaries of the latest evidence they have of the most effective practice. We hope it will inform and further the debate about how services can enhance the lives of older people today. In his foreword Lord Filkin says, 'The key question is how to make these years as healthy, happy and meaningful as possible and improve the quality of later life whenever we can. This sounds a heroic, even utopian, ambition but this excellent Age UK publication makes crucial points about how to realise this vision. It tells us that service designers and providers should listen to what older people say they want and value, and co-design services with them, rather than doing things to them. We should also need to recognise the huge diversity among older people, and make the best use of the evidence of what works best.' 'Services for Older People - What Works' is a valuable and accessible guide to current best practice in the care and support of older people. It makes essential reading for service providers, commissioners, and others who fund or deliver services for older people