Summary of the impact

There are an increasing numbers of people living into very old age. At the same time there is a drive to enable people to live within their own homes for as long as possible. Consequently, health and social care services that previously would have experienced very few people with dementia now have this as part of their core function. Yet there is no tradition in these services of supporting people with dementia and there are many reports of inadequate care. For example, Valleley reports that over half of people living in extra-care housing with dementia were admitted to other care settings during the first two years due to challenging behaviour, conflicts with staff and other residents, and distress on the part of the person with dementia.ⁱ Similarly, hospital patients with acute and chronic medical conditions concomitant with dementia are consistently reported to experience poorer quality outcomes than patients with similar conditions without dementia.ⁱⁱ The research described below has had significant benefits for those living with dementia both in extra-care housing and in hospital settings, primarily at the national level but also internationally. It has enhanced quality of life for individuals living with dementia, improved the practice of professionals working with people with dementia and had economic benefits.

Underpinning research

Professor Dawn Brooker (Director of the University of Worcester Association for Dementia Studies, 2009-present) has a long track record of research focused on the development of person-centred care for people with dementia in practice contexts. While this work began when Brooker was part of the Bradford Dementia Group at the University of Bradford (2001-2009), it has continued apace at Worcester. This case study focuses on this research in two specific contexts: in a long-term care setting and in an acute hospital setting.

Long-term care setting

Brooker undertook research (which began at Bradford but was completed at Worcester) to design a multi-level intervention, the Enriched Opportunities Programme (EOP) in conjunction with the Extra Care Charitable Trust (ECCT), the objective of which was to develop a sustainable activity-based model for people with dementia living in long-term care. An action research methodology was adopted, whereby the devised programme was subjected to a repeated measures evaluation in four practice development sites — three specialist nursing homes and one extra care housing scheme.ⁱⁱⁱ This was followed by a cluster-randomised controlled trial in 10 extra care housing schemes. This study compared the experience of people living with dementia and other mental health problems in extra care housing schemes that utilised EOP with schemes that employed an active control intervention. It showed that EOP-participating residents rated their quality of life more positively over time, were less likely than residents in the active control sites to move to a care home or to be admitted to a hospital in-patient bed and were more likely to be seen by a range of community health professionals (see Reference 1).

Acute hospital setting

Brooker undertook a project funded by the Department of Health West Midlands, in conjunction with Professor Dominic Upton (University of Worcester, 2006-present), to develop and implement (see grant a) and evaluate (see grant b) an intervention to improve the quality of care for and safety of patients with dementia in an acute hospital setting, known as the Dementia Care Bundle (DCB). The same methodological approach was adopted as in the long-term care setting: the DCB was developed through a literature review and collaboration with an expert group, a multi-disciplinary Person Centred Care Group at the study site (New Cross Hospital, Wolverhampton). A quasi-experimental design was used to address the early impact of the interventions on patients, their families, staff and volunteers working in the hospital and key stakeholders in developing and sustaining the programme of work as a whole. Questionnaires, interviews, observations of practice and surveys were undertaken prior to the intervention and at different time points during the intervention to assess change over time. Patient, family and staff outcomes were evaluated pre- and post-intervention alongside on-going patient data to monitor the impact of the DCB at an individual patient level for 183 patients with moderate to severe dementia and concomitant physical health problems over a 19 week period (see Reference2).

References to the research

Grants

a) Brooker D., Delivering Excellence in Acute Care for People with Dementia, NHS West Midlands, 2009-11, £41,000.

b) Upton D., Evaluation of Delivering Excellence in Acute Care for People with Dementia, NHS West Midlands , 2010-11, £66,000.

The University is confident the underpinning research meets the excellence threshold. Reference 1 is returned to REF 2014 with Output ID "Brooker1". Reference 2 is currently under review but has been `published' on the University's research repository (WRaP) in advance. The research which underpinned this article was funded through a grant won through competitive tender and the University contends that this is indicative that it meets the 2* quality threshold.

Details of the impact

The research described in Section 2 was designed to bring benefits to those living with dementia and it has done so in a number of ways both nationally and internationally.

The potential impact of the EOP is to a significant extent reflected in the research itself, particularly the RCT study (see Reference 1) which clearly highlights the benefits of the programme for those living with dementia in extra care housing as well as the economic benefits: there was an overall cost saving of £15,383 over a six month period, compared to a cost increase of £55,376 at the control sites. This is further emphasised by a technical report from the National Audit Office which also highlights the economic benefits of the programme: "This EOP initiative has demonstrated that by providing a proactive and integrated service between health, social care and housing services, people with dementia could be effectively cared for in extra care housing. Furthermore our analysis...indicates that if the EOP programme is rolled out to all extra care homes in England, over a two year period the savings to the public through reduced inpatient care and less utilisation of more intensive housing care provision could be around £21 million, shared between local government (for housing) and NHS (health care)" (Corroborating Source A).

The EOP has subsequently been rolled out in ECCT's 14 retirement villages and 17 smaller housing developments where it has had a direct impact on the lives of over 2000 tenants (Corroborating Source B). It is included on the Housing LIN (Learning Improvement Network) dementia in focus website which is the best used source of innovative information for housing with care services (Corroborating Source C).

The development of the DCB had an immediate impact on the study site. Upton's evaluation of the intervention shows how it both significantly improved patient outcomes and changed the practice of nurses and doctors for the better (Corroborating Source D). The impact on practice is further borne out by personal testimony. For example, a modern matron at the hospital stated: "The impact on me personally is I now understand how to care for patients in a person centred way. The impact on the Trust is an appreciation of skills and knowledge to care for patients with dementia, not seen as Cinderella service anymore. Person centred care is on the Nursing and Midwifery programme and Safeguarding plan for the Trust. Patient care has benefitted through improved outcomes and better experience" (Corroborating Source E). In addition, an external evaluation was undertaken by Dementia Care Matters to assess the continued impact of the research. Their CEO reflecting on practice at New Cross post-intervention states: "The service is exceptional and nursing staff inspired and led by passionate medical and nursing leaders achieve the very best of dementia care seen in the NHS...We all commented that it is rare to find in a Trust so many very passionate people committed to proving how much dementia care really matters" (Corroborating Source F).

The impact of the intervention on patient safety has been highlighted in a number of ways: the Royal Wolverhampton Hospitals NHS Trust won the 2012 Patient Safety in Clinical Practice for its dementia care initiative; while the DCB is a featured case study on the Health Foundation's Patient Safety Resource Centre (Corroborating Source G).

The impact of the research has moved beyond the Royal Wolverhampton Hospitals NHS Trust. It was always intended by NHS West Midlands that New Cross would act as a demonstration site and that lessons learnt could be adopted by other NHS Trusts. A 12 month adoption programme ran over 2012-13 which led to 12 NHS Trusts signing up to implement elements of the intervention. All the Trusts have implemented dementia education programmes and have developed the "This is Me" patient passport information systems that were advocated as the first element of DCB. Four Trusts have commenced pilots of the DCB with plans to commence in 3 others (Corroborating Source H).

The research has also fed into four Dementia Leadership Education Programmes which the Association for Dementia Studies won the contract to deliver. These have been delivered in Surrey, Sussex, Hampshire and Oxfordshire to 75 dementia care leads in health across 15 NHS Trusts during 2012-13. One of the course participants states: "The Programme...enabled me to gain an understanding of person centred approaches in caring for people with dementia and how this can be implemented within the acute hospital environment. I am also developing a dementia training programme for Trust employees to ensure that all staff have the knowledge and confidence to care and work with people with dementia, their families and carers...the educational programme I attended has given me the knowledge to be able to fulfil my new role and to successfully make a positive change to dementia care within my trust" (Corroborating Source I). This reflects how the research will feed into practice across these trusts and change this practice for the better.

The research has also had impact internationally. The German charitable trust the Robert Bosch Foundation have funded a programme to improve the quality of care for those living with dementia in German hospitals which has incorporated key elements of the DCB (Corroborating Source J).

Sources to corroborate the impact

A. National Audit Office (2010) Improving Dementia Services in England — an Interim Report. Technical Paper MARCH 2010. Economic model to assess the financial impacts of the Enriched Opportunities Programme for people with dementia in an extra2011care housing setting http://www.housinglin.org.uk/_library/Resources/Housing/Support_materials/Other_reports_and _guidance/EOP_Nat_Audit_Office_Tech_Paper.pdf.

B. Statement from Guy Page, Enriched Opportunities Coach/manager, ECCT 2009-2013.

C. Housing Learning Improvement Network Website: http://www.housinglin.org.uk/Topics/browse/HousingandDementia/Practice/Workforce/?parent=5154&child=5357

D. Upton, D., Krishnan, N., Bray, J., Bowen, T. & Foote, C. (2012) Report to NHS West Midlands: An evaluation of quality and cost effectiveness of a newly defined suite of care interventions for patients with dementia and their carers in the acute hospital setting developed by The Royal Wolverhampton Hospitals NHS Trust, Vols. 1-2. http://www.worcester.ac.uk/documents/Dementia_evaluation_report_for_New_Cross_Vol_1.pdf. http://www.worcester.ac.uk/documents/Dementia_evaluation_report_for_New_Cross_Vol_2.pdf.

E. Statement from Karen Bowley, Modern Matron, Royal Wolverhampton NHS Trust.

F. Statement from David Sheard, CEO Dementia Care Matters.

G. Brooker, D., Leung, D., Bowley, K., Etches, C., Bray, J., Smith, P. Willoughby, J., Hampson, G., & Upton, D. (2013). The Dementia Care Bundle: Improving the quality and safety of hospital care for patients with acute physical illness who have co-existing dementia. Health Foundation Patient Safety Resource Centre. http://patientsafety.health.org.uk/sites/default/files/resources/the_dementia_care_bundle.pdf

H. Hampson, G. (2013) Delivering Excellence in Dementia Care in Acute Hospitals: The West Midlands Adoption Process of the Royal Wolverhampton NHS Trust Dementia Care Bundle and Associated Composite Elements Report on the 12 Month Adoption Programme.

I. Statement from Rachel Hayden, Dementia Specialist Nurse, Hampshire Hospital Foundation Trust.

J. Statement from Dr Bernadette Klapper, Head of Health Section, Robert Bosch Foundation.

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ⁱ Vallelly, S et al. (2006) Opening doors to independence: A longitudinal study exploring the contribution of extra care housing to the care and support of older people with dementia London: Housing 21.
ⁱⁱ See for example: Francis, R. (2013) Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry London: The Stationery Office.
ⁱⁱⁱ Brooker, D. & Woolley, R. (2007) Enriching Opportunities for People living with Dementia: The Development of a Blueprint for a Sustainable Activity-Based Model of Care. Aging and Mental Health, 11(4): 371-383.