Living well with dementia

Living well with dementia, whether as a person with dementia (PwD) or primary (usually family) carer (PC), can be understood as maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life (QoL). Enabling PwD and PC to live well with dementia is a key UK policy objective, but policy recommendations do not tell us how this can be achieved. This project aims to understand what 'living well' means from the perspective of PwD and PC. It will identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia. In order to understand what 'living well' means to people with dementia and primary carers, and what influences the possibility of living well, we will find out about the things that affect the way in which people adapt to the effects of the condition and the challenges it presents, and how these things change over time. These include the assets and resources people have available, and the support they get from other people in their network. We will find out about how the way in which people respond to the challenges presented by dementia affects their ability to engage in activities and participate in the community. We will look at how all of these things relate to well-being, satisfaction with life and quality of life for PwD and PC, and how changes in assets and resources affect the possibility of 'living well' with dementia. Over a two-year period we will recruit 1500 people with early-stage dementia from all areas of the UK. We will also include a PC wherever possible, and we expect to include at least 1000 PC. We will make contact with potential participants through the local research networks that link with NHS memory services. We will visit all the participants (PwD and PC) and we will ask them to respond to questions about things that influence their life satisfaction, well-being and quality of life. This will yield numerical data that we will analyse statistically. We will visit all the participants on two more occasions, one year apart, to find out how things develop or change over time and how any changes affect their life satisfaction, well-being and quality of life. A smaller group composed of those whose ability to live well improves or declines over the first year of the study will be interviewed in more depth in years 2 and 3, and we will draw out the important themes in what they tell us and use what they say to enrich the understanding we have gained from the statistical analyses. We will involve an advisory network including PwD, PC, members of the public and representatives of the Alzheimer's Society in running the study to help make sure that it is relevant to PwD and PC and that the best possible use is made of the findings. We will use our findings to create an action plan setting out what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. We will work with policy-makers to ensure that the information we have gained will influence future policies. We will work with commissioners and providers of health services and social care services, and with practitioners in these areas, using the evidence we have gained to improve the effectiveness of services. We will engage with the general public to try to encourage a more constructive attitude towards dementia and make local communities more aware and dementia friendly. The study will be the first large-scale study of its kind and will help to develop the skills of researchers in the dementia field and stimulate new developments. It will provide a unique resource and focus for social science research in the UK and internationally.

We expect this study to have a major impact on the lives and experiences of people with dementia (PwD) and primary carers (PC) in the UK and internationally. Improved outcomes for PwD and PC will yield significant social and economic benefits for society in general and including economic benefits for the NHS and for social care service providers in particular. The findings will provide an understanding of the factors that support or constrain the ability of PwD and PC to live well with dementia, and the possibilities for change and improvement. The resulting comprehensive picture of the current UK situation in relation to policy aspirations will offer a firm foundation for policy and practice development in relation to living with dementia. We will aim to have a significant impact in three key areas. First, academically the study will provide robust and high quality research evidence on what factors affect the capacity of PwD and PC to live well with dementia and will identify those factors that are amenable to effective intervention in the short, medium and long term. The study will have a significant impact on dementia research nationally and internationally by advancing methods in the area, contributing a unique data resource for social science researchers and providing a focal point for increasing the capacity of multidisciplinary research to contribute to this important research area. Second, we will work closely with practitioners in health and social care so that the study makes a significant contribution to translating into effective health and social care practice the improved knowledge and understanding of ways of addressing the capacity of PwD and PC to live well arising from the findings. Third, the research will provide insights and evidence to support the development of dementia-friendly communities. By focusing on the lived experience of dementia and the daily lives, social relations and physical and social environments of PwD and PC we will be able to examine how everyday social interactions in a range of areas (shopping, travelling, leisure, internet, volunteering, financial, etc) facilitate or present barriers to living well, and to identify ways in which public perceptions of dementia can be improved. In so doing we will identify areas where changes (even at low levels) may improve people's daily lives and disseminate this material to groups working to develop dementia-friendly communities and key public, private and third sector organisations. Throughout the study we will utilise a range of impact pathways involving engagement with the general public, practitioners, service providers and policy-makers. These will include creating a prominent internet and social media presence, developing printed and online materials, contributing to training courses and programmes, conducting regional workshops linked to local research networks, presenting at events and conferences, and contributing articles to practitioner and academic journals. A consensus meeting will be held with the aim of synthesising the research findings to form an action plan identifying what can be done by individuals, practitioners, service providers and policy-makers to enhance the potential for living well with dementia. This will be presented at an end-of-study conference we will organise for practitioners, providers and organisations working in the field, in order to stimulate collaborative working with key stakeholders to address the aims of the action plan. Through these activities we aim to have a significant impact by influencing public perceptions of dementia, enhancing the work of practitioners in health and social care, encouraging the development of new approaches and interventions, contributing to the development of cost-effective service provision, and improving policy.