Data collection is from a parallel group, two-arm, multicentre, feasibility, randomised controlled trial to examine the feasibility of conducting a definitive randomised trial comparing the clinical and cost-effectiveness of the PRIDE intervention (a self-management intervention designed to promote living well and enhance independence) offered in addition to usual care to usual care alone for people with mild dementia. This was work package 4 of the Promoting Independence in Dementia Research Programme funded by the ESRC and NIHR Programme for Applied Research.People with dementia lose much more than just their memory and daily living skills. They can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can often be seen as a burden by society, their families and even by themselves, and feel unable to contribute to society, and they lack opportunities to reciprocate by doing things for others. This adds to the stigmatising of people even if they only have mild memory problems. The focus of this study is promoting independence in dementia which could have substantial benefits for the people with dementia, their families, and NHS and social care. This should translate into major economic (eg reduced costs of care) and societal benefits. Dementia is a national priority and this proposal addresses the Prime Minster's commitment to dementia research and the need to improve community support. In the UK over 800,000 older people have dementia costing the nation over £17 billion a year through the provision of health and social care services. Dementia has profound effects on family carers who through their actions save the UK economy over £6 billion a year. This means there is a need both to better understand the impact of social and lifestyle factors on the broader ageing population at risk of dementia, and to promote independence and quality of life for people with dementia. This study aims: (a) to identify how social and lifestyle changes may help reduce risk of developing dementia and disability and to better understand the social consequences of dementia. (b) to develop and evaluate an effective social intervention to support independence and quality of life for people with early stage dementia and their carers. The first aim will be addressed using the information from the English Longitudinal Study of Ageing (ELSA) cohort which has followed up over 10,000 older people biennially over ten years, collecting information about their health, wealth, lifestyle and social activities. Our initial analysis of the data set indicates that the use of email/internet may reduce cognitive decline and that staying physically active can help improve people's daily living skills. We will do further analyses looking at the frequency of dementia amongst older people in the community and the potential impact of changes in lifestyle (eg exercise, use of computers) on how cognitive abilities may change over time. In the next two ELSA surveys (2014 and 2016) we will ask people about their expectations of ageing, including memory loss and dementia, the associated fear and stigma and what would make it more or less likely for them to seek help if needed. We will explore the concerns and expectations people have (eg loss of identity and loss of independence) at the point of referral to memory services, at the point of diagnosis, and for the following two years. We will also investigate their experiences in terms of loss of role and quality of life. The second aim will be investigated by using an in depth consultation with people with dementia and their carers and an appraisal of the scientific evidence to develop an evidence based social intervention designed to promote independence and support lifestyle changes most likely to benefit cognition (eg physical activity, use of computers) delivered by a dementia advice worker. In a large clinical trial of memory services across the UK, the intervention will be evaluated in comparison to usual care to evaluate potential benefits to independence and quality of life.

Data was collected from participants randomised to the PRIDE feasibility trial at baseline, 3 months and 6 months. Recruitment to the trial took place at six secondary care sites in England. Inclusion criteria for the feasibility trial were: (1) resident within the catchment area of one of the participating NHS sites, (2) aged 18 or over; there is no upper age limit, (3) met the Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition (DSM-IV) criteria for dementia of any type, including Alzheimer’s, vascular, Lewy body type and mixed. (4) Able to engage with and participate in the intervention in the judgement of the investigator or designee. (5) Able to provide informed consent in the judgement of the investigator or designee. (6) Able to read and communicate verbally in English. (7) Had mild dementia, defined as a score of 0.5 or 1 on the Clinical Dementia Rating (CDR) Scale. Exclusion criteria for the feasibility trial were: living in institutional care. Participants were visited by a researcher at each time point (usually in the participant's home). Data collected consisted of questionnaires and assessments. Participants could choose to take part in the trial either on their own or with a supportive other. If the participant chose to identify a supportive other they wished to participate with, the inclusion criteria for the supporter were: (1)Aged 18 or over; there is no upper age limit. (2) Able to engage with and participate in the intervention. (3) Able to provide informed consent. (4) Able to read and communicate verbally in English. Supporters were asked to complete questionnaires at baseline, 3 and 6 months.