English Longitudinal Study of Ageing (ELSA)
ELSA is large, nationally representative study using a panel of individuals aged 50 years and over. ELSA is aimed at gaining a deeper understanding of the physical, psychological, social and economic aspects of ageing. The first wave of ELSA was carried out in 2002 and over 12,000 core sample members and their partners were interviewed during this wave. Participants are interviewed every two years and a nurse visit is carried out at every other wave. The first three waves of ELSA are now complete and data collection for wave 6 was completed in May 2013. You can find more about ELSA at www.elsa-project.ac.uk
ELSA began in 2002 with 11,391 members aged 50-100 years, and the sample is reassessed every two years. A range of cognitive processes including memory, executive function, numerical ability, and literacy have been assessed by face to face interview. Additionally, ELSA includes extensive measures of demographics, socioeconomic circumstances, income and assets, consumption, expectations, physical and mental health, lifestyle, social and civic participation, well being, and psychosocial factors, together with biomarkers and DNA. In the ELSA surveys (2014 and 2016) we ask people about their expectations of ageing and independence 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.
Research suggests that people find it hard to acknowledge dementia and both carers and sufferers avoid planned management of the condition. There are changes going on in the health sector in relation to dementia, as well as cultural, social and institutional changes in approach and understanding creating an opportunity to find ways of collaborating on coping strategies.
Research already carried out suggests that a diagnosis can be used by people with dementia to inform a process of organising and planning how they and their friends and family can cope, but few studies have actually looked at how this works in “real-world” family and social situations. To provide data relevant here will require in-depth research to appreciate the stories and processes which contribute to the variety of such experiences over time. We will conduct a qualitative mixed methods study using texts, one-to- one interviews, and observation with the aim of deepening and sustaining understandings from multiple perspectives.
We will develop and trial a social intervention that will be derived from a review of publications on psychological and social interventions in early stage dementia, the qualitative results from work package one, and a consensus process to coproduce with Public Patient Involvement (PPI) representatives an optimised social intervention based on self-management principles (e.g. individual goal-setting, monitoring, action planning).
We will conduct a multi-centre, pragmatic, single blind randomised controlled trial (RCT) of the social intervention developed from work carried out in WP3.
We will be recruiting people with mild dementia, living in community settings (as opposed to care homes), who have a family carer, willing and able to participate in the study, attending as new appointments at local memory services and we will be recruiting from a range of services across the UK.
For the all researchers associated with the PRIDE programme we will develop an interdisciplinary mentor system with a continuing professional development programme. This will include opportunities to (1) assume roles in work packages, (2) develop/lead public engagement projects (3) organise seminars for peers/practitioners, (4) presentations at conferences, (5) write both academic papers and materials for the public. This work package will also provide an international platform for European researchers to develop the necessary research skills, abilities and expertise.
As part of this work package the INTERDEM Academy will be set up. The INTERDEM academy will support career development and capacity building of researchers in the area of psychosocial interventions and timely diagnosis in people with dementia.
The INTERDEM Academy will have an international impact improving dementia care by fostering research collaboration, improving knowledge exchange and developing junior researchers. The INTERDEM Academy will enable fellowships for PhD students and postdoc researchers allowing them to spend 3-6 months in another PRIDE/ INTERDEM research centre; a biannual programme for students/researchers of (1) seminars to discuss their work with peers/academics, (2) expert workshops/ masterclasses to develop ideas and methodology expertise, (3) academic writing for papers and grants.
INTERDEM is the world’s largest international network for dementia care research and provides the ideal infrastructure for this goal. Besides the development of pan-European research on early, timely and quality psychosocial interventions in dementia, INTERDEM’s mission statement is to actively disseminate this and enhance practice, policy and the quality of life of people with dementia and their supporters, across Europe.