Carol Brayne on behalf of the executive group 10 October 2013 CLAHRC East of England Dementia, Frailty, End of Life Care Theme

Theme co-leads Cambridge Dr Stephen Barclay, Palliative Care Carol Brayne, Public Health Medicine Professor John O’Brien, Old Age Psychiatry UEA Professor Antony Arthur, Nursing Dr Chris Fox, Old Age Psychiatry Prof Fiona Poland, Social Research Methodology Professor Catherine Sackley, Rehabilitation Research University of Hertfordshire Dr Frances Bunn, Health Care Research Professor Claire Goodman, Health Care Research

Improved health with extended lifespan Ageing population Increased numbers of people with cognitive and physical impairment – ‘third age’ and ‘fourth age’ How society and the public sector changes to adapt to these increases is a challenge Our theme aims to contribute t o knowledge on what might work and be generalisable Context

To develop the evidence base supporting effective, efficient and affordable delivery of safe, timely and coordinated people-centred services to those transitioning to the fourth age of life and at the end of life. Overarching aim

Approach Short term: to build on previous CLAHRC funding and existing programmes of work across the regional collaboration Medium term: to implement early research findings into practice regionally, nationally and internationally, while continuing longer- term research projects and establishing new studies Long Term: to secure implementation of all research into practice for patient benefit and consolidate the legacy of CLAHRC East through the development of researchers skilled in applied elderly and end-of-life care (EOLC) research.

Programme structure Executive set up with specific terms of reference 4 projects identified to be included in the proposal Several topics have been included in the recent Fellowship adverts Potential additional projects to come through theme for peer review in processes being set up Further Fellowship topics will be put forward

Project 1. Population Dementia Risk Reduction Principle: assessment of potential for dementia risk reduction building on existing programmes of work (CFAS II), focusing on comorbid and frail groups (complementary to School for Public Health Research). Consistent with NIHR policies to enhance use of existing data and build on review evidence, this programme of linked projects aims to maximise potential in existing population- based longitudinal studies, extending these into preventive intervention research.

Project 2. Impacts of Dementia case-finding Motivation: many policy initiatives ongoing to raise awareness across healthcare settings, including financial incentives to service providers for case-finding, with potentially important consequences. This project is an evaluation of the variety of dementia case- finding systems, being used in our region including validation of tools being used within acute hospitals as well as community settings.

Project 3. Eating and drinking well in Dementia (Edwina) At any time in the UK there will be substantial numbers of people with severe dementia with eating and drinking difficulties This is a source of distress to both PwD and their carers as well as health consequences This study aims to increase understanding of the problems around eating and drinking well for people with dementia, and the solutions that may help people

Project 4. Admissions Close to the End of life (ACE) Aims to understand the factors influencing decisions to admit adult patients to hospital with a range of potentially life- limiting and who die within three days Understanding such influences on the ground with those involved in care at this lifestage will help formulate appropriate responses

The use of 999 Ambulance services by people with dementia living at home and in care homes Enhancing activity participation in dementia patients with motor symptoms Health economics of community rehabilitation and specialist nursing Interventions to postpone frailty Projects in development

Potential topics for fellowships (on website to be expanded) Use of routine anonymised NHS secondary care records to examine presentation, outcome and secular trends in Mild Cognitive Impairment and Dementia Psychotropics and non-pharmacological approaches to behavioural and psychological symptoms of dementia in care homes survey Web-Based support for family dementia carers dealing with distress behaviours Psychological therapies for people with depression in dementia

Key success factors Existing partnerships across region in research, service and training Working with new structures across different statutory, voluntary and commercial sectors – many themselves in transition Seeing opportunities in this change to test and evaluate Building in training of future applied researchers and research active practitioners Engagement with the people and communities to ensure meaningful and sustainable outcomes