Background: If an older relative with dementia with suspected COVID-19 becomes unwell quickly, family carers and the person with dementia may have to make rapid decisions. Decisions may concern hospital admission or whether to receive care at home, social distancing, and which treatments the person may or may not wish to receive. This can include very difficult decisions such as whether the person wishes to be resuscitated or have other potentially traumatic treatments. These decisions will have an impact on the emotional wellbeing of both the family and person with dementia. Aim: We will produce an evidence-based decision tool to support family carers and people with dementia to make these difficult decisions during COVID-19. Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions. Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.

The proposed project will focus on the evolution of public memorialisation in response to the COVID-19 pandemic. Partnering with the Marie Curie charity and its campaign for a national Day of Reflection in 2021, it will draw academic expertise on civic memorialisation together with stakeholder organisations (charities, faith groups, and public bodies) to examine two core issues. First, how new practices may be beneficially informed by scholarship on British public memorialisation of traumas in the 20th century. Second, how varied stakeholder opinions on the format, organisation, and narratives of a national Day of Reflection on COVID-19 can be critically integrated into the development of the memorialisation activities. In this way the project will look to both past precedents and the complexities of the present, building up an analytical framework that impactfully contributes to social responses to the pandemic. In undertaking this work the project will consider how memorialisation navigates several key relationships: between 'top down' state-led memorialisation and local agency; between memorialisation as a force for unity and the need to reflect social diversity; between mourning loss and celebrating achievements during the crisis; between varied forms of memorial ritual; between national self-validation and self-critical reflection. Outputs from the project will include a series of workshops that draw together memory studies scholars and non-HEI participants, an open-access written report for Marie Curie and other stakeholders that informs preparations for the national Day of Reflection, and a major conference paper and follow-up publication.

AP4L is a 3-year program of interdisciplinary research, centring on the online privacy & vulnerability challenges that people face when going through major life transitions. Our central goal is to develop privacy-by-design technologies to protect & empower people during these transitions. Our work is driven by a narrative that will be familiar to most people. Life often "just happens", leading people to overlook their core privacy and online safety needs. For instance, somebody undergoing cancer treatment may be less likely to finesse their privacy setting on social media when discussing the topic. Similarly, an individual undergoing gender transition may be unaware of how their online activities in the past may shape the treatment into the future. This project will build the scientific and theoretical foundations to explore these challenges, as well as design and evaluate three core innovations that will address the identified challenges. AP4L will introduce a step-change, making online safety and privacy as painless and seamless as possible during life transitions To ensure a breadth of understanding, we will apply these concepts to four very different transitions through a series of carefully designed co-creation activities, devised as part of a stakeholder workshop held in Oct'21. These are relationship breakdowns; LBGT+ transitions or transitioning gender; entering/ leaving employment in the Armed Forces; and developing a serious illness or becoming terminally ill. Such transitions can significantly change privacy considerations in unanticipated or counter-intuitive ways. For example, previously enabled location-sharing with a partner may lead to stalking after a breakup; 'coming out' may need careful management across diverse audiences (e.g - friends, grandparents) on social media. We will study these transitions, following a creative security approach, bringing together interdisciplinary expertise in Computer Science, Law, Business, Psychology and Criminology. We will systematise this knowledge, and develop fundamental models of the nature of transitions and their interplay with online lives. These models will inform the development of a suite of technologies and solutions that will help people navigate significant life transitions through adaptive, personalised privacy-enhanced interventions that meet the needs of each individual and bolster their resilience, autonomy, competence and connection. The suite will comprise: (1) "Risk Playgrounds", which will build resilience by helping users to explore potentially risky interactions of life transitions with privacy settings across their digital footprint in safe ways (2) "Transition Guardians", which will provide real-time protection for users during life transitions. (3) "Security Bubbles", which will promote connection by bringing people together who can help each other (or who need to work together) during one person's life transition, whilst providing additional guarantees to safeguard everyone involved. In achieving this vision, and as evidenced by £686K of in-kind contributions, we will work with 26 core partners spanning legal enforcement agencies (e.g., Surrey Police), tech companies (e.g., Facebook, IBM), support networks (e.g., LGBT Foundation, Revenge Porn Helpline) and associated organisations (e.g., Ofcom, Mastercard, BBC). Impact will be delivered through various activities including a specially commissioned BBC series on online life transitions to share knowledge with the public; use of the outputs of our projects by companies & social platforms (e.g., by incorporating into their products, & by designing their products to take into consideration the findings of our project) & targeted workshops to enable knowledge exchange with partners & stakeholders.

The 'oldest old' are the fastest growing age group in the UK and a grand societal challenge we face is that the nature of growing older and end of life is changing. There are distinct challenges that are pushing some existing systems to breaking point (e.g. there is an increasing demand for care, but there are reductions in resources available to support the older old and worryingly a reduction in people using local authority care services which is suggestive of exclusion). We position this research within the fourth age; a period of life clinically characterised by physical and cognitive frailty and decline towards death. People in this period of life are seldom included in research, but have a unique voice around critical societal challenges and could be sensitively and meaningfully included into research in order to give them a voice in the reimagining of digital media to support sense of self for the older old. Further this research will engage with carers and those bereaved to investigate how new media could support people's relationships and sense of self not only at end of life but also in bereavement. We are living in a new digital age, each gathering a digital trail of media and personal data as we live: photographs, videos, blog posts, forum comments, Facebook conversations, tweets, music preferences etc. Whether these are created by us or by others about us there is a vast and rich wealth of digital media that could be leveraged and reappropriated to reflect positive things back to us in new ways - about ourselves and our connectedness with others. The concept of ongoingness is something we see as valuable for the development of new tools and systems for the configuration of metadata in new ways. Ongoingness suggests that all stages of our lives are connected and continuing, which gives us ways to think about what digital media creation and consumption practices could be that draw on the repository of media connected to us in challenging contexts. It also gives us the ability to consider how digital technologies could be developed in acknowledgement that people need to maintain a form of connectedness to a dead loved one in bereavement. Beyond memorialisation people benefit from practices that nurture an ongoing (albeit different) relationship with the deceased after a loved one has died. To date there is a lack of research considering technology for these contexts and what we can't do currently is curate this vast resource of media to specifically support sense of self, help people deal with their own approaching end of life, nor help others deal with bereavement of a loved one through using these digital assets in purposeful ways. Through links via our partners from Alzheimer's Society, Cruse, NCPC, HospiceUK, Dementia Positive, Marie Curie and Dementia Care we will work with older old people, carers and the bereaved using a research through design methodology to gently use acts of making and reflecting through objects to firstly develop new ways of using our metadata, secondly develop and deploy Internet of Things high fidelity prototypes that enable creation and curation of this digital media in new ways and thirdly develop new visions of consumption that foreground ongoingness. To give an example of what this could mean in the context of anticipating death - through their lives Betty and Derrick always used to jokingly argue with each other as to which song was better The Beatles 'Blackbird' or 'Dear Prudence'. Derrick curates their media so that after his death when Betty selects 'Blackbird', the song 'Dear Prudence' will always be played straight afterwards because he knows that it will make Betty smile. The couple loved gardening, now every May Betty unfolds her e-paper and a compilation of podcasts featuring specific flowers from the current year's Chelsea Flower Show are sent to Betty and a matching bouquet is delivered to her with anecdotes from Derrick's blog of how he grew some of these plants.

In the UK about 820,000 people live with dementia with numbers increasing rapidly as the population ages. The Government's "Challenge on Dementia" aims to drive improvements in health and care, create dementia friendly communities and improve research. Responding to this challenge, our MARQUE programme "Managing Agitation and Raising Quality of Life", aims to increase knowledge about dementia, agitation and personhood. We will use the programme to: -develop our theoretical knowledge of dementia, agitation, how people with dementia and their carers experience these and their relationship to citizenship and personhood. -reduce agitation in people with moderate and severe dementia and thus increase quality of life, through the known link between agitation and quality of life. -mentor existing and train new researchers, to build a legacy of trained dementia researchers. Agitation is common, occurring in about 50% of people with moderate or severe dementia every month, is distressing for them and for those around them. The symptoms include restlessness, pacing, shouting or even verbal or physical aggression and signify unmet need. The person with dementia may be in pain, hungry, thirsty, needing comfort or bored but unable to know or explain this. Our group (including Shirley Nurock, an Alzheimer's Society carer) has completed a funded literature review on interventions to reduce agitation. Our vision is to build on this evidence, advancing knowledge, including how to effectively implement findings to improve quality of life for those with dementia. It is a bold and ambitious proposal by a multi-professional team, our family carer partners and participating national and international groups. The team, who have previously worked together successfully, comprise social sciences, medicine, nursing and psychology. A DeNDRoN PPI focus group advised on and approved our proposal. We are partnered by Alzheimer's Society who are leading PPI, care home groups and voluntary and parliamentary groups. The research will involve observing and interviewing a wide range of people with dementia and those who care for them at home, in care homes and in hospitals (including end of life) in order to better understand how agitation is currently managed, barriers to good practice and how care could be improved. We will use this information (with our literature review findings) to develop, test and implement a manual to train staff about how best to reduce agitation and improve quality of life in care homes. It will be tested in a randomised controlled trial in 14 care homes. Our vision is to make this as central to care as good eating and hygiene. Our programme at home will lead to a pilot home intervention, including massage, found to be effective in our review. In addition, we will further develop another manual, to improve people with dementia's end of life for, including "terminal agitation" (comprising restlessness, anxiety, sleeplessness and shortness of breath around the time of dying). This manual will be piloted in four nursing homes (and a control home) and staff, family and residents asked whether it is helpful, practical and feasible. Our programme lasts 5 years but we expect carers and people with dementia to start to benefit from 2 years as we begin testing. It will improve our understanding of current practice and the challenges for family and paid carers. We will have programmes to put into practice across the UK to help manage agitation, including at home, in care homes and at the end of life. We will know what works, is cost effective and how to implement. This will improve quality of life for people with dementia and their carers wherever they live and will help guide research and practice. Our partners will then work with us to ensure national publicity and implementation. This will include incorporation into care home and hospital inductions and feedback to Care Quality Commission as a potential new care standard.