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EVIDEM: Changing practice in dementia care in the community. Developing and testing evidence-based interventions, from timely diagnosis to end of life

Purpose

To assemble a community cohort of people with dementia and their families, within which intervention studies can be nested. The objectives are to develop and test interventions that improve patient, carer and service outcomes at three major stages of dementia: 1) recognition and first response; 2) management of behavioural and psychological symptoms of dementia (BPSD), and of incontinence; and 3) end of life care. Within the SCWRU the programme is evaluating the impact of the Mental Capacity Act 2005, and will develop educational interventions to support the use of the Act. 

Research team

Steve Iliffe, University College London (Principal Investigator)
Claire Murdoch, CNW London NHS Foundation Trust
James Warner, Imperial College London
Claire Goodman, University of Hertfordshire
Jill Manthorpe, SCWRU
Jess Harris, SCWRU
Kritika Samsi, SCWRU
Jane Wilcock, University College London
Vari Drennan, St George’s, University of London & Kingston University
Greta Rait, University College London
Martin Knapp, London School of Economics

Funding

National Institute for Health Research

Background

Dementia has an enormous impact on the lives of individuals and families, and on health and social services, and this will increase as the population ages. The needs of people with dementia and their carers for information and support are inadequately addressed at all key points in the illness trajectory. 

Methods

The Unit is working specifically on an evaluation of the impact of the Mental Capacity Act 2005, and will develop practice guidance to enhance concordance with the Act. Phase One of the study has involved baseline interviews with practitioners across a wide range of services to establish knowledge and expectations of the Act, and to consider change processes when new policy and legislation are implemented.

Findings

Phase 1, involving baseline interviews with 115 practitioners, identified variable knowledge and understanding about the principles of the Act. Phase 2 is exploring everyday decision-making by people with memory problems and their carers.

Website

http://www.evidem.org.uk

Timetable

2007 – 2012

Output

Report

Iliffe, S., Wilcock, J., Drennan, V., Goodman, C., Griffin, M., Knapp, M., Lowery, D., Manthorpe, J., Rait, G. & Warner, J. (2015) 'Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)', Programme Grants for Applied Research, 3(3).

Articles  

Manthorpe, J. & Samsi, K. (2014, online) 'Care homes and the Mental Capacity Act 2005: Changes in understanding and practice over time', Dementia.

Manthorpe, J. & Samsi, K. (2014, online) 'Care professionals' understanding of the new criminal offences created by the Mental Capacity Act 2005', International Journal of Geriatric Psychiatry.

Samsi, K., Manthorpe, J. & Chandaria, K. (2014) 'Risks of financial abuse of older people with dementia: findings from a survey of UK voluntary sector dementia community services staff', Journal of Adult Protection, 16(3): 180-192.

Manthorpe, J., Samsi, K. & Rapaport, J. (2014) 'Dementia nurses' experience of the Mental Capacity Act 2005: a follow-up study', Dementia: the International Journal of Social Research and Practice, 13(1): 131-143.

Manthorpe, J., Iliffe, S., Goodman, C., Drennan, V. & Warner, J. (2013) 'Working together in dementia research: reflections on the EVIDEM programme', Working with Older People, 17(4): 138-145.

Manthorpe, J. & Samsi, K. (2013) 'Changing practice: adapting to the Mental Capacity Act 2005', Social Care and Neurodisability, 4(3/4): 124-133. 

Samsi, K. & Manthorpe, J. (2013) 'Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers', International Psychogeriatrics, 25(6): 949-961.

Manthorpe, J., Samsi, K. & Rapaport, J. (2013) '‘Capacity is the key’: investigating new legal provisions in England and Wales for adult safeguarding', Journal of Elder Abuse & Neglect, 25(4): 355-373.

Manthorpe, J. & Samsi, K. (2013) 'Inherently risky?: Personal budgets for people with dementia and the risks of financial abuse: Findings from an interview-based study with Adult Safeguarding Coordinators', British Journal of Social Work, 43(5): 889-903. 

Manthorpe, J., Iliffe, S., Goodman, C., Drennan, V. & Warner, J. (2013) 'Working together in dementia research: reflections on the EVIDEM programme', Working with Older People, 17(4): 138-145.

Manthorpe, J., Samsi, K. & Rapaport, J. (2012) 'Responding to the financial abuse of people with dementia: A qualitative study of safeguarding experiences in England', International Psychogeriatrics, 24(9): 1454-1464.

Manthorpe, J., Samsi, K. & Rapaport, J. (2012) 'When the profession becomes personal: dementia care practitioners as family caregivers', International Psychogeriatrics, 24(6): 902-910.

Samsi, K., Manthorpe, J., Nagendran, T. & Heath, H. (2012) 'Challenges and expectations of the Mental Capacity Act 2005: an interview-based study of community-based specialist nurses working in dementia care', Journal of Clinical Nursing, 21(11-12): 1697-1705.

Manthorpe, J., Samsi, K. & Rapaport, J. (2012) '“More of a leg to stand on”: Views and usage of the Mental Capacity Act 2005 among staff of local Alzheimer's Society and carer organisations', Aging & Mental Health, 16(1): 102-109.

Manthorpe, J., Samsi, K., Heath, H. & Charles, N. (2011) ' "Early days": Knowledge and use of the Mental Capacity Act 2005 by care home managers and staff', Dementia: the International Journal of Social Research and Practice, 10(3): 283-298. 

Samsi, K., Manthorpe, J. & Rapaport, P., (2011), '“As people get to know it more”: Experiences and expectations of the Mental Capacity Act 2005 amongst local information, advice and advocacy services', Social Policy & Society, 10(1): 41-54.

Samsi, K. & Manthorpe, J. (2011) '“I live for today”: A qualitative study investigating older people’s attitudes to advance planning', Health & Social Care in the Community, 19(1): 52-59.  

Manthorpe, J. & Iliffe, S. (2010) 'Suicide in later life: public health and practitioner perspectives', International Journal of Geriatric Psychiatry, 25(12), pp. 1230-1238.

Manthorpe, J., (2009), 'Mental health in later life: better outcomes through wise commissioning', Journal of Integrated Care, 17(5): 15-22.

Manthorpe, J. & Iliffe, S., (2009), 'Changing the culture of social work support for people with early dementia', Australian Social Work, 62(2): 232-244.

Manthorpe, J., Rapaport, J., Harris, J. & Samsi, K., (2009), 'Realising the safeguarding potential of the Mental Capacity Act 2005: early reports from adult safeguarding staff', Journal of Adult Protection, 11(2): 13-24.

Manthorpe, J. & Samsi, K., (2009), 'Implementing the Mental Capacity Act 2005: challenges for Commissioners', Journal of Integrated Care, 17(3): 39-47.

Iliffe, S., Manthorpe, J., Drennan, V., Goodman, C. & Warner, J., (2008), 'The EVIDEM programme: a test for primary care research in London?', London Journal of Primary Care, August: 1-5.

Iliffe, S., Manthorpe, J., Warner, J., Drennan, V., Goodman, C., Rait, G. & Kharicha, K., (2008), 'Making progress in psychosocial research in dementia', Dementia, 7(2): 167-174.

Manthorpe, J. & Iliffe, S., (2007), 'Timely recognition of dementia: community nurses' crucial roles', British Journal of Community Nursing, 12(2): 74-76.

Moniz-Cook, E., Manthorpe, J., Carr, I., Gibson, G. & Vernooij-Dassen, M., (2006), 'Facing the future. A qualitative study of older people referred to a memory clinic prior to assessment and diagnosis', Dementia, 5(3): 375-395.

Professional press

Manthorpe, J. & Samsi, K. (2013) 'Mental capacity and dementia: a review. Part 2', Journal of Dementia Care, 21(1): 35-38.

Manthorpe, J. & Samsi, K. (2012) 'Making decisions in dementia care: has the Mental Capacity Act helped social work practice in England and Wales?', Community Care, 28 November.

Manthorpe, J. & Samsi, K. (2012) 'Mental capacity and dementia: a review. Part 1', Journal of Dementia Care, 20(6): 35-38.

Manthorpe, J. & Samsi, K. (2012) 'Mental capacity: the force of law', Journal of Dementia Care, 20(4): 12-13.

Presentations / conference papers

Manthorpe, J. (2015) 'The challenges of embedding the MCA in practice: what the research does and doesn't say', Kirklees, 14 August.

Manthorpe, J. (2015) 'The Mental Capacity Act and risk', British Association of Social Workers England Conference, Sheffield, 29 June.

Manthorpe, J. (2015) 'Mental Capacity Act', Making Research Count, Bolton, 16 June.

Samsi, K. (2015) 'The dementia care pathway', Symposium with Bouvé College of Health Sciences, Northeastern University, Boston. London, 28 May.

Manthorpe, J. (2015) 'Psychosocial interventions in dementia', 4th Elteca, Prague, 15 May.

Manthorpe, J. & Samsi, K. (2013) 'From professional to the personal: dementia care practitioners as family carers', Alzheimer Europe, Malta, 10 October.

Manthorpe, J. & Samsi, K. (2013) 'Understanding the new criminal offences created by the Mental Capacity Act 2005', Annual Conference of the British Society of Gerontology, University of Oxford, 11 September.

Manthorpe, J. & Samsi, K. (2013) 'Use and views of the Mental Capacity Act 2005', Evidence Based Interventions in Dementia: Findings, London, 16 April.

Samsi, K. & Manthorpe, J. (2012) 'Everyday decision-making among people with dementia and carers' [pdf, 105 KB], Gerontological Society of America's 65th Annual Scientific Meeting, San Diego, 14 November.

Manthorpe, J., Samsi, K. & Chandaria, K. (2012) 'Protecting people with dementia from financial abuse [poster]' [pdf, 52 KB], 7th UK Dementia Congress, Brighton, 30 October - 1 November.

Manthorpe, J. & Samsi, K. (2012) 'Planning in advance for long term care needs' [pdf, 195 KB], 2nd International Conference on Evidence-based Policy in Long-term Care, London, 7 September.

Samsi, K. & Manthorpe, J. (2012) 'Everyday independent and joint decision-making' [pdf, 107 KB], British Society of Gerontology 41st Annual Conference, Keele University, 12 July.

Manthorpe, J., Samsi, K. & Chandaria, K. (2012) 'Preventing financial abuse in dementia' [pdf, 533 KB], British Society of Gerontology 41st Annual Conference, Keele University, 11 July.

Manthorpe, J. & Samsi, K. (2012) 'Offences under the Mental Capacity Act 2005' [pdf, 358 KB], Margaret Butterworth Care Home Forum, London, 10 July.

Manthorpe, J. & Samsi, K. (2011) 'Developmental steps in building a toolkit to challenge wilful neglect and ill-treatment under the Mental Capacity Act [poster]' [ppt, 382 KB], UK Dementia Congress, Liverpool, 1-3 November.

Samsi, K. & Manthorpe, J., (2011), 'Use and views of the Mental Capacity Act 2005' [pdf, 117 KB], British Society of Gerontology 40th Annual Conference, Plymouth, 7 July.

Manthorpe, J., (2010), 'Questions about mental health capacity', 30th Annual GP Forum, Royal Society of Medicine, 14 September.

Manthorpe, J., (2010), 'Working with the Mental Capacity Act', Making Research Count, University of Keele, 13 September.

Samsi, K., (2010), 'Planning for retirement and later life' [ppt, 166 KB], 39th Annual Conference of the British Society of Gerontology, Brunel University, 7 July.

Manthorpe, J., (2010), 'Safeguarding, choice, accountability, risk-taking...Social work decision-making in context' [ppt, 1,388 KB], Social Work Decision-Making Conference, University of Ulster, Belfast, 28 June.

Samsi, K., (2010), '"It helps us to give people something concrete that they can work with": Early views of local Alzheimer's Society staff of the Mental Capacity Act 2005' [ppt, 520 KB], Older People's Conference Day, North East London NHS Foundation Trust, Ilford, 24 June.

Manthorpe, J., (2010), 'Reporting EVIDEM', Community Mental Health Team for Older Adults Meeting, Acton, 7 April.

Manthorpe, J., (2010), 'Making decisions: Working with the Mental Capacity Act in social care practice', Making Research Count: The National Dementia Strategy Practice Perspectives: One Year On, King's College London, 1 March.

Related work

Manthorpe, J., Rapaport, J. & Stanley, N., (2008), 'The Mental Capacity Act 2005 and its influences on social work practice: debate and synthesis', Practice: Social Work in Action, 20(3): 151-162.

Manthorpe, J., Rapaport, J. & Stanley, N., (2009), 'Expertise and experience: people with experiences of using services and carers' views of the Mental Capacity Act 2005', British Journal of Social Work, 39(5): 884-900.

Rapaport, J. & Manthorpe, J., (2008), 'Putting it into practice: will the new Mental Health Act slow down or accelerate integrated working?', Journal of Integrated Care, 16(4): 22-29.

See also

The SCWRU Action Plan at Dementia Action Alliance (link to news item).

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