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.

The number of people living in the UK with dementia is rising. Friends and family provide much of the care needed. Having a caring role may compromise well-being, quality of life, and finances. The annual economic cost of supporting people with dementia is estimated at £26.3 billion, with almost half being attributed to the care provided by 'informal carers'. Without informal carers government costs would be increased greatly. Maintaining carer quality of life and finding a way of measuring it are important not only for the carers and those cared for, but also for society. Having an accurate and meaningful way of measuring carer quality of life is needed in three distinct areas. 1. Individual carer assessment: to identify carers most at need. 2. Development and evaluation of services. 3. Policy making: to inform decision making concerning government spending. There are numerous quality of life questionnaires with many used in dementia carer assessment. However, some are too general and do not pick up subtle changes in carer quality of life, others are too long and some have unreliable ways of working out scores. Some questionnaires (e.g.EQ-5D) have been used by organisations such as NICE (National Institute for Health and Care Excellence) to make recommendations on how money is spent by working out the 'value' the general population put on different health related quality of life situations (health states). The EQ-5D may be useful to value 'health states' but less useful in valuing 'carer states' since these go beyond health. Furthermore the 'value' the general population put on health/carer states may be different to the 'value' carers put on these states. Therefore, the aims of this study, undertaken in two workstreams, are to: -develop a quality of life questionnaire for carers of people with dementia (Carer-QoL) for use as described above in points 1-3, -test how justifiable the underlying rules used by NICE are in 'valuing' benefits to carers, -estimate preliminary 'values' for Carer-QoL. Workstream 1: developing the new questionnaire (3 phases) To capture the 'carer' experience the questionnaire items will be obtained directly from carers (phase 1 and 2 with 72 carers). The questionnaire scoring will be worked out in phase 3 in which 400 carers will be asked to complete the new questionnaire items and to complete the EQ-5D. The Carer-QoL will be created from the longer list of questions (without losing score accuracy and range) using an approved method called Rasch analysis. Workstream 2: valuation and calibration (3 studies) In study one, 1,000 people (general population, carers of people with dementia and other carers) will value different EQ-5D health states. These health states will include their own (real) as well as states previously reported by other carers (hypothetical) in national surveys. Values for real and hypothetical health states will be compared across each group. In the second study the scores from the EQ-5D and the Carer-QoL, collected in Workstream 1, will be jointly analysed to calibrate the Carer-QoL against EQ-5D scores. In the third study carer profiles will be generated using responses collected using the Carer-QoL in Workstream 1. Another 1,000 people (general population and carers) will be asked to select which carer profile they prefer from pairs of carer profiles presented in a web-based survey. From this it will be possible to place a value on the Carer-QoL scores from both a carer and a general population view point. Beneficiaries from the research outcomes include: carers, people being cared for, service providers, policy makers and other researchers. This research will inform the debate on the value of health and quality of life and could contribute new empirical evidence bearing on the issue of perspective in determining that value. This will benefit decision-making bodies such as NICE as well as those submitting evidence on effectiveness and cost-effectiveness.

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.