Dementia is currently a major healthcare problem. As our population ages, the number of people suffering from dementia increases yearly. This comes at both a large human and financial cost. Currently, there is no cure for dementia but medication can help to delay the progress of the disease although this has varying degrees of success - other treatment options which involve the patient more directly in their own care are therefore a necessity. Mild cognitive impairment (MCI - defined as a level of cognitive impairment which although noticeable, does not impact sufficiently on an individual's life to be diagnosed as dementia) is seen a stepping stone in the development of dementia, with large numbers of people diagnosed going on to develop dementia over the coming years. One of the main symptoms of dementia and MCI is the detrimental effect that it has on cognitive processes (for example memory, planning, perception and orientation). Within an elderly age group, research suggests that increasing physical activity can have beneficial effects on cognitive processes in later life and this may also be the case in individuals with MCI. This can also be protective as people who are more physically active in their younger years are at less risk of developing dementia as they get older. Unfortunately, many of the studies carried out so far in groups with MCI have not been performed to a high methodological standard, often with mixed groups of dementia participants with different diagnoses of dementia (it is likely that different types of dementia will respond differently to physical activity, just as they do with medications prescribed), in different care settings and without comparable cognitive assessment tools. This means that there is no current clinical advice for individuals with MCI, their caregivers and healthcare professionals as to what sort of physical activity may be beneficial to them as an alternative to current treatments. We propose to develop a behaviour change program which promotes the use of physical activity to maintain cognitive function and prevent cognitive decline in older adults at risk of dementia (those with MCI). This will aim to change the behaviour of both the individual with MCI and the healthcare professionals responsible for their care with the ultimate aim that physical activity can be offered as a healthcare 'prescription' to individuals.

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.

People with dementia say that personal contact is key to their well-being, while many family members providing unpaid care are isolated and feel lonely. People with dementia and the family members who care for them are especially vulnerable to the impact of the physical distancing measures needed to reduce the risk of developing coronavirus (Covid-19) symptoms. These measures can be frightening and can damage well-being and relationships, while reducing accessibility of care services and support. With social restrictions continuing for an extended period, people affected by dementia risk being 'left behind' as the rest of the population adapts. Our approach to delivering high-quality care and support for people affected by dementia must change to take account of this. In the INCLUDE study we aim to understand the impact of the Covid-19 epidemic and the resulting restrictions on people with dementia and their carers, and to develop resources to address the negative and potentially harmful effects of this situation. We will invite people with dementia and carers participating in the ongoing 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) programme to take part in INCLUDE. IDEAL has been following a large group of people with dementia and carers over time to understand what makes it possible for people to 'live well' with the condition. The findings highlight the importance of the very social and psychological resources that are most likely to have been affected by the Covid-19 epidemic. The INCLUDE study will add a new data collection module to the IDEAL programme. This will be specifically designed to examine the impact of the Covid-19 epidemic and resulting restrictions. Participants will complete questionnaires and respond to open-ended questions in a structured interview, and a sub-set will additionally engage in a more conversational semi-structured interview about their experiences. People with dementia and carers will be involved in developing the interview schedules. We expect 300 people with dementia and 300 carers to complete the structured interview, with up to 50 people with dementia and 50 carers completing the semi-structured interview. The information that INCLUDE participants provide will enable us to understand how Covid-19 has affected people with dementia and carers as a whole and how the impact differs for particular sub-groups, for example based on age, type of dementia, or socioeconomic status. Because we already have a good deal of information about IDEAL participants we will be able to link their responses with information they provided previously. This will allow us to identify the impact of Covid-19 on trajectories of symptoms and well-being; for example, we can pinpoint where changes over time in particular symptoms are greater than expected. We will also explore the ways in which changes for the person with dementia affect the carer and vice versa. Working together with people with dementia and carers, we will use the evidence gained to develop the Living Well Alongside Coronavirus (LILAC) toolkit, a set of resources to support social, mental and physical health and relationships for people with dementia and carers, and provide guidance for health, social care and voluntary sector staff.

One of the most rewarding aspects of reading a novel is the experience of seeing the world through the eyes of a character, especially when it offers a new or unusual perspective, known as 'mind style' in literary linguistics. This is the first comprehensive mind style analysis of dementia narratives, including Elizabeth is Missing (Healey 2015), The Corrections (Franzen 2010), The Wilderness (Harvey 2010) and Still Alice (Genova 2007) amongst others. Because of the wide-ranging ways dementia can be experienced and depicted, this project will push the boundaries of the mind style model, developing its scope and analytical power. However, this project also investigates how literary language depicting the minds of characters with dementia can provide a 'way in' to understanding a socially stigmatised condition associated with loss of personhood. Some might argue that fictional representations of dementia have little relevance to real experiences: our contention is that dementia is different for everyone, so there is no 'real' means of measuring representative accuracy, nor should fiction conform to 'reality'. Indeed, fiction is unique in the way that it lets us access the workings of other peoples' minds so closely. To illustrate, we offer a short vignette of how Jonathan Franzen, in his award-winning book The Corrections, uses mind style to take the reader inside the mind of Alfred, a character with dementia: Alfred was standing in the master bedroom wondering why the drawers of his dresser were open, who had opened them, whether he had opened them himself. He couldn't help blaming Enid for his confusion. For witnessing it into existence. For existing, herself, as a person who could have opened these drawers. Alfred's confusion and agitation is iconically represented in the listed questions 'wondering why...who...whether...'. The use of repetitive, speech-like, 'live' sentence constructions 'for-, 'for-', 'for-', involves us in Alfred's search for blame. In our pilot study (Lugea et al 2017), we asked participants in a Reading Group to listen to a longer version of this extract, underlining features of interest, completing a short questionnaire, and engaging in a group discussion. A participant living with dementia reported, 'this is my life' and other readers reported feeling as if they had access to Alfred's thoughts and experience. This vignette illustrates a major advantage of using literary representations of dementia: fictional mind styles allow us to show, rather than tell people what it is like to experience dementia. Our project uses fictional extracts which display features of dementia mind styles to explore the potential of fiction to unlock deeper understanding and empathy towards people with dementia. The Reading Groups will include: 1. people in the early stages of dementia 2. caregivers 3. social work/policy students 4. the general public The readers' responses will inform our analyses of the fictional texts, developing the mind style model itself and providing further empirical insight into how real readers interact with fictional characters. The findings will be shared in academic, social policy and cultural settings. We will publish a booklet to be used in ongoing dementia training and support. The project will culminate in a Dementia Fiction Festival, celebrating the boom of fiction on the topic and contributing to the growing public awareness of the condition. The texts analysed, as well as works from local and international authors, will be showcased through live readings, performances and screenings. With the support of dementia charities, the events will be dementia-friendly, giving people living with dementia a rare chance to engage in directly-relevant cultural activities. Ultimately, we provide a method which could be replicated to improve cultural understandings and empathy towards dementia in other contexts, and similar illnesses in any context.

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.