Title: Support at Home - Interventions to Enhance Life in Dementia (SHIELD)
Funder: Department of Health (England)

Abstract: Aim The aim of this applied research programme is to prevent excess disability, promote social inclusion, improve health outcomes, and enhance the quality of life for people with dementia and their carers. The aim will be achieved by a rigorous 5 year programme of psychosocial research building on existing work by the applicant team; in cognitive stimulation, reminiscence work, and carer support, and also by a new initiative developing intensive home support to manage crises at home, and prevent admission to hospital for people with dementia. Background In the UK over 600,000 older people have dementia resulting in progressive cognitive deterioration, increasing disability and social exclusion. This has an enormous social and economic impact on health and social care services, and on family carers. There are many psychosocial interventions for dementia but often these have not been standardised, adequately evaluated or systematically implemented. CST is an evidenced based approach which has been shown to be both beneficial to cognitive function and quality of life, and also cost-effective. Since the degree of cognitive benefit from CST is similar to cholinesterase inhibitors, longer term CST may have an impact on admissions to long term care. Reminiscence work with people with dementia taps into early memories and encourages communication and wellbeing and a recent meta-analysis indicates that involving people with dementia and their carers is more effective than working only with carers. Our trial platform successfully developed a manual for joint reminiscence (RYCT) and suggests that RYCT improves the caring relationship and benefits both. Our experience from the BECCA programme showed many ex-carers are motivated to support others at an earlier stage in their role as a family carer through mentoring and teaching. There is some evidence that home treatment teams may reduce admissions for people with dementia however better evidence for their effectiveness is required before wider implementation is considered. This research programme will provide essential evidence to clarify the role of each of these interventions in: helping to support people at home, reducing hospital and care home admissions; and improving the quality of life for people with dementia and their carers. Research Plan Project 1: will develop, evaluate, and implement a training package and carry out a multicentre RCT of Maintenance Cognitive Stimulation Therapy for people with dementia. Project 2 will develop, evaluate and implement a training programme for reminiscence groups (RYCT) for people with dementia and their carers. Project 3 will develop, evaluate and implement a training package to train ex-carers to be ‘Expert Carers’ who will then mentor and train new carers of people with dementia. This will include an exploratory trial and a full RCT comparing the Expert Carer programme with RYCT separately and together vs usual care. Project 4 will develop a evaluate and implement a home treatment approach to intensively support and manage people with dementia experiencing crises at home, and prevent admissions to hospital or care homes. Each project will include an economic evaluation. Research Team Applicants: Prof. Martin Orrell, Prof. Bob Woods, Prof. Ian Russell (Statistician/Trials Advisor), Prof. Martin Knapp, (Health Economist) Prof. Esme Moniz Cook, Prof. David Challis, Dr Georgina Charlesworth, Judy Wilson (Chief Executive –NELMHT). The applicants have substantial expertise in psychosocial research and have recruited over 1000 people with dementia into such studies in last 5 years. In addition the application benefits from close links with Dementia Services Development Centres in London, Wales and North West England. Research Environment: NELMHT covers 4 boroughs in North East London with a catchment of approximately 9299 have dementia. It has a strong R&D Department, 3 well established memory clinics, and is a member of the North Thames Dendron Hub. Outputs/outcomes: Each study will complete components of the cycle of development, piloting, evaluation, dissemination and implementation within the 5 year period. As they are at different stages with CST being the most and HTP the least developed it is expected that CST would be disseminated/implemented in year 3 whereas for HTP this would occur between years 4 and 5. For all studies a manual/workbook/training package would be produced to enable other services to implement the packages. Publications would be produced for highly ranked peer reviewed journals. Public Involvement: There is significant involvement of carers, people with dementia and the voluntary sector throughout the programme. In addition, volunteer ex-carers will be recruited and trained to help new carers. Justification of resources: This is a major 5 year research programme and the costings reflect the volume of work involved. ?


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL