This collection contains semi-structured qualitative interviews with a sample of 20 of the study’s participants with dementia, along with their main carer. Improving the Experience of Dementia and Enhancing Active Life (IDEAL) is a longitudinal cohort study. It focused on the potential for living well with dementia from the perspective of people with dementia and their primary carers. By living well, we mean maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life in the context of the challenges that dementia presents for individuals, relationships and communities. Drawing together expertise from psychology, sociology, medicine, public health, economics, social policy, physiology and statistics, the study examined what can be done to ensure that as many people as possible are enabled to live 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.

Interviews focus on what it means to live well with dementia and the barriers and facilitators to living well. This collection contains 71 interviews with 40 participants. The first part of the research consists of 40 interviews, 20 with people with dementia and 20 with their main carer. The second part of the research consists of 31 follow-up interviews which took place approximately 12 months later. A small number of these follow-up interviews were conducted with both the person with dementia and the main carer together. Participants were contacted first by the memory clinic acting as a partner in the research, and then, if agreed by the participant, the researcher made contact and arranged a time to visit them at home to carry out the interview. Analysis of the main cohort questionnaire study, consisting of about 1,500 participants, was used to identify individuals who had shown a degree of change in their living well outcome measures (based on quality of life, satisfaction with life and well-being). Of these individuals, we chose an equal number of those who had experienced a positive change (n=10), and those who had experienced a negative change (n=10) to participate in these qualitative interviews. Additionally, in selecting participants, we tried to ensure a varied sample including equal numbers of men and women, a mixture of people dwelling in rural and urban locations and a mixture of socio-economic backgrounds (e.g. based on previous occupation and income). We also selected from those living with the most common causes of dementia (Alzheimer's disease and/or vascular dementia).