Included under terms of UK Non-commercial Government License.
NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.
Headline
The programme has shown the benefits of interdisciplinarity collaboration in dementia research from diagnosis through to end-of-life care and demonstrated the value of mixed methodologies in addressing complex problems.
Abstract
Background:
The needs of people with dementia and their carers are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end-of-life care. The EVIDEM (Evidence-based Interventions in Dementia) research and development programme (2007–12) was designed to help change this situation within real-life settings.
Objectives:
The EVIDEM projects were (1) evaluation of an educational package designed to enhance general practitioners’ (GPs’) diagnostic and management skills; (2) evaluation of exercise as therapy for behavioural and psychological symptoms of dementia (BPSD); (3) development of a toolkit for managing incontinence in people with dementia living at home; (4) development of a toolkit for palliative care for people with dementia; and (5) development of practice guidance on the use of the Mental Capacity Act (MCA) 2005.
Design:
Mixed quantitative and qualitative methods from case studies to large database analyses, including longitudinal surveys, randomised controlled trials and research register development, with patient and public involvement built into all projects.
Setting:
General practices, community services, third-sector organisations and care homes in the area of the North Thames Dementia and Neurodegenerative Diseases Research Network local research network.
Participants:
People with dementia, their family and professional carers, GPs and community mental health team members, staff in local authority social services and third-sector bodies, and care home staff.
Main outcome measures:
Dementia management reviews and case identification in general practice; changes in behavioural and psychological symptoms measured with the Neuropsychiatric Inventory (NPI); extent and impact of incontinence in community-dwelling people with dementia; mapping of pathways to death of people with dementia in care homes, and testing of a model of collaborative working between primary care and care homes; and understandings of the MCA 2005 among practitioners working with people with dementia.
Results:
An educational intervention in general practice did not alter management or case identification. Exercise as a therapy for BPSD did not reduce NPI scores significantly, but had a significant positive effect on carer burden. Incontinence is twice as common in community-dwelling people with dementia than their peers, and is a hidden taboo within a stigma. Distinct trajectories of dying were identified (anticipated, unexpected and uncertain), and collaboration between NHS primary care and care homes was improved, with cost savings. The MCA 2005 legislation provided a useful working framework for practitioners working with people with dementia.
Conclusions:
A tailored educational intervention for general practice does not change practice, even when incentives, policy pressure and consumer demand create a favourable environment for change; exercise has potential as a therapy for BPSD and deserves further investigation; incontinence is a common but unrecognised problem for people with dementia in the community; changes in relationships between care homes and general practice can be achieved, with benefits for people with dementia at the end of life and for the UK NHS; application of the MCA 2005 will continue to improve but educational reinforcements will help this. Increased research capacity in dementia in the community was achieved. This study suggests that further work is required to enhance clinical practice around dementia in general practice; investigate the apparent beneficial effect of physical activity on BPSD and carer well-being; develop case-finding methods for incontinence in people with dementia; optimise working relationships between NHS staff and care homes; and reinforce practitioner understanding of the MCA 2005.
Trial registration:
EVIDEM: ED-NCT00866099; EVIDEM: E-ISRCTN01423159.
Funding:
This project was funded by the Programme Grants for Applied Research programme of the National Institute for Health Research.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. EVIDEM-ED: a cluster-randomised controlled trial to improve early diagnosis and clinical management of dementia in primary care
- Chapter 2. EVIDEM-E: exercise as a therapy for behavioural and psychological symptoms of dementia – a randomised controlled trial of clinical effectiveness and cost-effectiveness
- Chapter 3. EVIDEM-C: promoting continence and managing incontinence with people with dementia living at home
- Abstract
- Introduction
- Background: the overall need for the EVIDEM-C study
- The research approach and design
- Phase 1: reviewing the evidence for incidence, prevalence and effective strategies
- A cohort study of the incidence and management of incontinence in primary care
- A systematic review of interventions and strategies
- A review of English community health services continence policies and clinical guidance
- Phase 2: exploring the experience, strategies, impact and consequences
- Phase 3: investigating the feasibility, effectiveness and acceptability of an identified strategy
- Phase 4: developing and testing resources for practice
- Summary of the main findings
- Conclusions
- Changes to protocol
- List of appendices
- Chapter 4. EVIDEM-EoL: quality of care at the end of life
- Chapter 5. EVIDEM-MCA: implementing the Mental Capacity Act 2005
- Chapter 6. EVIDEM: from cohort to research register
- Chapter 7. Implications for research, policy and practice
- Diagnosis and management in primary care
- Exercise as therapy for behavioural and psychological symptoms of dementia
- Managing incontinence in community-dwelling people with dementia
- End-of-life care in dementia
- Evaluating the Mental Capacity Act 2005
- A dementia cohort
- The benefits of programme funding
- Conclusions
- Acknowledgements
- References
- Appendix 1 Chapter 1: Findings from literature reviews of interventions in primary care designed to alter clinical practice with patients with dementia
- Appendix 2 Chapter 1: Advisory and steering group membership
- Appendix 3 Chapter 1: Diagnostic and management processes identified by the expert team
- Appendix 4 Chapter 1: Changing clinical practice in dementia: elements of a training programme – for primary care team
- Appendix 5 Chapter 1: General practitioner questionnaire
- Appendix 6 Chapter 1: Carer semi-structured interview schedule
- Appendix 7 Chapter 1: Medical records data extraction tool – baseline (time 1)
- Appendix 8 Chapter 2: Research protocol EVIDEM-E study
- Appendix 9 Chapter 2: Consenting protocol – standard operating procedures
- Appendix 10 Chapter 2: Standard operating procedure for monitoring of adverse events
- Appendix 11 Chapter 2: Risk assessment and management tool
- Appendix 12 Chapter 2: Serious adverse event reporting form
- Appendix 13 Chapter 2: Risk management pathway
- Appendix 14 Chapter 2: Diary – intervention group, example page
- Appendix 15 Chapter 2: Diary – control group, example page
- Appendix 16 Chapter 2: Intervention protocol
- Appendix 17 Chapter 3: Overall EVIDEM-C protocol 2007
- Appendix 18 Chapter 3: Protocol – exploring issues and solutions in promoting continence and managing incontinence with people with memory problems living at home and their carers, 2008
- Appendix 19 Chapter 3: Protocol – professional views of current issues and solutions in promoting continence and managing incontinence with people with memory and cognition problems living at home
- Appendix 20 Chapter 3: Protocol – investigating the experience of managing continence problems over time, version 2, 2010
- Appendix 21 Chapter 3: Protocol – incidence and management of incontinence in general practice patients with dementia: an analysis of THIN data, 2011
- Appendix 22 Chapter 3: Protocol – investigating the acceptability, effectiveness and associated costs of different types of absorbent products used for incontinence by people with memory problems living at home, 2010
- Appendix 23 Chapter 3: Protocol – a modified Delphi consultation to develop a dementia-focused continence assessment tool for use with people with dementia living at home, 2010
- Appendix 24 Chapter 3: Adoption by research networks and research permissions
- Appendix 25 Chapter 3: EVIDEM-CL1 March 2011 – briefing for Local Authority Adult Services managers and social workers
- Appendix 26 Chapter 3: Aide-memoire for guided conversations with the person with dementia
- Appendix 27 Chapter 3: Aide-memoire in the qualitative interview study with family carers
- Appendix 28 Chapter 3: Interview tools to characterise the person with dementia and the carer in the longitudinal study and absorbent pads study
- Appendix 29 Chapter 3: Validated tools used in the longitudinal study and the absorbent pads study
- Appendix 30 Chapter 3: Toileting difficulties and incontinence questions used in addition to the ICIQ-UI and ICIQ-N, for the longitudinal study and the absorbent pads study
- Appendix 31 Chapter 3: Further incontinence questions about pad usage for the longitudinal study
- Appendix 32 Chapter 3: Additional table in the Client Service Receipt Inventory (part 1) longitudinal and absorbent pads study
- Appendix 33 Chapter 3: Data collection tools for examining feasibility and acceptability in the absorbent pads study
- Appendix 34 Chapter 3: Additional table in the Client Service Receipt Inventory (part 1) for the absorbent pads study
- Appendix 35 Chapter 4: Phase 1 protocol
- Appendix 36 Chapter 4: Phase 2 protocol
- Appendix 37 Chapter 4: Care home manager topic guide
- Appendix 38 Chapter 4: Care worker topic guide
- Appendix 39 Chapter 4: NHS and social services staff topic guide
- Appendix 40 Chapter 4: Emergency services topic guide
- Appendix 41 Chapter 4: Care notes data extraction form
- Appendix 42 Chapter 4: Care home manager/senior carer topic guide
- Appendix 43 Chapter 4: Care home staff topic guide
- Appendix 44 Chapter 4: NHS staff topic guide
- Appendix 45 Chapter 4: Relatives prompt guide
- Appendix 46 Chapter 4: Emergency services prompt guide
- Appendix 47 Chapter 4: Intervention design, Phase 2
- Appendix 48 Chapter 4: Intervention information – general
- Appendix 49 Chapter 4: Intervention information – care home staff
- Appendix 50 Chapter 4: Intervention information – district nurses/general practitioners
- Appendix 51 Chapter 4: Intervention material – post-death analysis
- Appendix 52 Chapter 4: Participant developed tools – prompt sheet
- Appendix 53 Chapter 4: Participant developed tools – out-of-hours information sheet
- Appendix 54 Chapter 4: EVIDEM-EoL advisory group members
- Appendix 55 Chapter 4: Care home characteristics
- Appendix 56 Chapter 4: Care home resident needs and deaths in year prior to study
- Appendix 57 Chapter 4: Care homes’ access to primary and specialist services
- Appendix 58 Chapter 4: Resident baseline characteristics
- Appendix 59 Chapter 4: Service utilisation and associated costs
- Appendix 60 Chapter 4: Sample information – interviews
- Appendix 61 Chapter 4: Phase 2 – documentation changes
- Appendix 62 Chapter 5: EVIDEM-MCA protocol
- Appendix 63 Chapter 5: Details of the four phases of study design
- Appendix 64 Chapter 5: Semi-structured interview schedules
- Appendix 65 Chapter 5: Five main stages in framework analysis
- Appendix 66 Chapter 5: Narrative account of findings
- Appendix 67 Chapter 6: Proposed data capture fields with definitions for primary care
- Glossary
- List of abbreviations
Article history
The research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0606-1005. The contractual start date was in August 2007. The final report began editorial review in February 2013 and was accepted for publication in July 2014. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Declared competing interests of authors
none
- NLM CatalogRelated NLM Catalog Entries
- Review Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families[ 2017]Review Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for familiesMoniz-Cook E, Hart C, Woods B, Whitaker C, James I, Russell I, Edwards RT, Hilton A, Orrell M, Campion P, et al. 2017 Aug
- Review Improving mental health and reducing antipsychotic use in people with dementia in care homes: the WHELD research programme including two RCTs[ 2020]Review Improving mental health and reducing antipsychotic use in people with dementia in care homes: the WHELD research programme including two RCTsBallard C, Orrell M, Moniz-Cook E, Woods R, Whitaker R, Corbett A, Aarsland D, Murray J, Lawrence V, Testad I, et al. 2020 Jul
- Review Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT[ 2021]Review Components, impacts and costs of dementia home support: a research programme including the DESCANT RCTClarkson P, Challis D, Hughes J, Roe B, Davies L, Russell I, Orrell M, Poland F, Jolley D, Kapur N, et al. 2021 Jun
- Review Support at Home: Interventions to Enhance Life in Dementia (SHIELD) – evidence, development and evaluation of complex interventions[ 2017]Review Support at Home: Interventions to Enhance Life in Dementia (SHIELD) – evidence, development and evaluation of complex interventionsOrrell M, Hoe J, Charlesworth G, Russell I, Challis D, Moniz-Cook E, Knapp M, Woods B, Hoare Z, Aguirre E, et al. 2017 Feb
- Review Supporting good quality, community-based end-of-life care for people living with dementia: the SEED research programme including feasibility RCT[ 2020]Review Supporting good quality, community-based end-of-life care for people living with dementia: the SEED research programme including feasibility RCTRobinson L, Poole M, McLellan E, Lee R, Amador S, Bhattarai N, Bryant A, Coe D, Corbett A, Exley C, et al. 2020 Sep
- Changing practice in dementia care in the community: developing and testing evid...Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)
Your browsing activity is empty.
Activity recording is turned off.
See more...