Improve the health and wellbeing of older people and the quality of community care they receive, especially for people living with dementia.
Award Number
NIHR-RP-011-043Award Type
Research ProfessorshipsProgramme
NIHR ProfessorshipsStatus / Stage
CompletedDates
2 May 2012 -1 September 2017
Duration (calculated)
05 years 03 monthsFunder(s)
NIHRFunding Amount
£1,149,052.04Funder/Grant study page
NIHRContracted Centre
University of Newcastle upon TynePrincipal Investigator
Professor Dame Louise RobinsonPI Contact
a.l.robinson@ncl.ac.ukPI ORCID
0000-0003-0209-2503WHO Catergories
Models across the continuum of careDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 113 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | NIHR-RP-011-043 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20120502 |
| End Date | 20170901 |
| Duration (calculated) | 05 years 03 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University of Newcastle upon Tyne |
| Funding Amount | £1,149,052.04 |
Abstract
Living well with dementia: towards more cost-effective and integrated community care Introduction: The number of people with dementia in the United Kingdom (UK) is estimated to double to 1.7 million by 2050 (Knapp and Prince, Alzheimer s Society 2007), with predicted increases in related disability (Jagger et al 2009). Reports from the National Audit Office (2008, 2010) reveal that people with dementia, and their families, are often in receipt of poorly integrated and inadequate health and social care despite the introduction of the National Dementia Strategy in England (Accessed www.dh.gov.uk/). Care of people with dementia has particular implications for primary care, with two thirds of people with dementia currently living in their own home or in care homes, cared for by their general practitioner (GP). Dementia presents one of the biggest challenges to our economy. In 2010, the UK costs of caring for people with dementia were estimated at 20 billion and are predicted to increase to 27 billion by 2018; 40% of these costs are from community/care home costs (Alzheimer s Disease International, 2010). The need for more research into dementia especially, at the T2 translational level, was emphasised in the 2011 report from the Ministerial Advisory Group on Dementia Research (MAGDR) and also in the recent House of Commons All Party Parliamentary Group (APPG) Report: The 20 billion question – improving quality of life through cost effective dementia services (2011). The latter highlights the urgent need to develop and evaluate more cost effective care; it recommends a whole systems approach with i) early proactive intervention ii) more integrated care iii) dementia friendly environments with greater use of assistive technologies; iv) better care in care homes and at end of life and v) the creation of a skilled, motivated workforce. My proposed programme will target these five areas highlighted in the APPG report through four research workstreams and a fifth, focused on NHS workforce development and training. Workstream(WS)1: Early intervention in dementia: cost effective psychosocial packages of care for GP commissioning (0-18 months) Contributors: Professor Esme Moniz Cook, Professor Robert Woods, Professor Martin Orrell (UK); European Interdem network. Importance of topic: There is international consensus that the disclosure of a diagnosis of dementia should occur earlier in the disease trajectory than in current practice. Our research exploring the patient perspective of receiving a diagnosis showed that most people wish to know, even though this may cause short-term distress, so that they can access drug therapies, information and practical support and plan ahead for their future care (6,24). Recent amendments to NICE guidance on dementia will hopefully lead to more people receiving anticholinesterase drugs at an earlier stage. However there is increasing evidence that psychosocial therapies (e.g. cognitive rehabilitation, cognitive stimulation) can facilitate the reframing of dementia, emphasising a person s abilities rather than disabilities, and enabling positive coping strategies. Despite this evidence, such therapies are not routinely accessible to GPs in community care (10). Key questions: Which community-based psychosocial packages of care represent best value for GP commissioners to purchase? Which psychosocial packages of care are the most acceptable and would most feasibly integrate into current NHS community care?Methods: i) Critical review and synthesis of qualitative and quantitative literature (including economic evidence) summarising the evidence to date on psychosocial therapies in dementia. This systematic review will be carried out in collaboration with national and international experts in the field i.e. Interdem network. ii) Task groups of key stakeholders (patients, carers, commissioners, care providers); evidence summaries will be presented and users views on feasibility and acceptability of the best models will be sought. Key deliverable: GP commissioning guidance on cost-effective psychosocial packages of care in early dementia. WS2: Cost-effective community care: the case management model in dementia. (12-48 months). Contributors: Professor Steve Iliffe; Professor Carolyn Chew Graham (UK) and the Interdem network. Importance of topic: The 2011 APPG report recommended the ‘case manager model’ as a possible community intervention high quality dementia care. This combines a care/case manager to co-ordinate care; liaise with GPs and secondary care and utilise evidence-based care pathways to manage health and psychosocial aspects of care; it has been successful in other conditions (depression, diabetes). A US trial evaluating this model found significant improvements for both people with dementia and family carers (Callahan et al., 2006). Key questions: Can the benefits of the case management model in dementia be replicated in the NHS? How is the dementia case management model best integrated into existing NHS care? Methods: The NHS Quality, Innovation, Productivity and Prevention (QIPP) programme provides examples of best value, high quality care (http://www.evidence.nhs.uk/QIPP). I am currently co-principal investigator on a NIHR-funded pilot trial developing and evaluating a UK case management model for dementia in NHS care. Through i) secondary data analysis of qualitative data from this pilot trial and ii) an updated systematic review, we will explore whether this model can provide high quality, more efficient community care and which service delivery model best integrates into existing care systems. At the end of this pilot study (2012), a bid will be submitted to NIHR for a full randomised trial, with an embedded cost analysis study and nested qualitative process evaluation. Key deliverable: NHS QIPP practical guidance (+ training package) for GP commissioners for the implementation of the dementia case manager model in community care. WS3: Routinisation of assistive technologies into dementia care (18-36 months) Contributors: Professor Paul Watson; Professor Patrick Olivier, Professor Peter Gore, Professor June Andrews (Stirling) Importance of topic: Assistive technologies provide a solution to promote autonomy for older people via disease monitoring (telehealth) or the enhancement of personal safety (telecare); however their potential to facilitate independence is still underutilised in the NHS (2,14,15,17,21). Newcastle University s 12 million Digital Hub project, Social Inclusion through the Digital Economy (SIDE), is exploring how older people access technologies to promote social inclusion (http://www.side.ac.uk). For people with dementia, access to assistive technologies is usually via health/social care but is generally limited; alternative local models of good practice exist (http://www.atdementia.org.uk). In addition, they have been rarely involved in technology development/evaluation (23,24) and so current devices may not meet their needs. Key questions: Which assistive technologies, if any, are routinely used by people with dementia and their families and what are their areas of residual need? How do people with dementia and their families access information/practical support about assistive technologies and how can this be improved upon?Methods: Newcastle University has been awarded 1 million (Technology Strategy Board, with matched funding from industry), to explore new business models for better uptake of technologies into NHS care, with data collection from key stakeholders including patients, industry and NHS staff (see other grant income: SALT project). Secondary analysis of this data will be supplemented with qualitative data (focus groups/interviews) with people with mild/moderate dementia and their main family carer, to address the above questions. Key deliverable: Person-centred methods of information provision/practical advice on assistive technologies for people with dementia. WS4) Improving health care for people with dementia in care homes (24-48 months). Contributors: Professor Murna Downs; Professor Cees Hertogh (Netherlands); Dr Finbarr Martin. Importance of topic: Our ageing population will lead to an increased need for long term care places. The British Geriatrics Society (BGS) Quest for quality report (2011) demands better health care for people in care homes, but acknowledges the limited evidence on different models of care. In the Netherlands specialist nursing home physicians provide health care to residents and a 3 month care homes training rotation is compulsory for GPs. Currently the majority of people with dementia die in a care home setting, with few dying at home or in hospices. Despite increasing international research, the Ministerial Advisory Group on Dementia Research (MAGDR) highlighted the paucity of UK research in end of life care in dementia and named it a research priority (MAGDR, 2011). Key questions: Which aspects of health care do GPs find most challenging to deliver to their patients with dementia living in care home? What additional training and/or services would improve the quality of primary care and how should this be provided? Methods: As i) the primary care lead on the BGS Care homes project and ii) my coapplicant status on a NIHR Programme Development Grant examining the quality of health care in care homes (2011), I will have access to data from a national survey of PCTs/GPs (i) and detailed data on the health of a cohort of patients in care homes (ii). Secondary analysis of both datasets will inform the content and focus of national e-questionnaire survey to GPs seeking their views on the key questions. Analysis will inform the development of a prototype intervention which will require further funding for evaluation and refinement. Key deliverable: Better health care in care homes: the exact nature of the intervention cannot be specified prior to WS: it may be educational, commissioning guidance or QIPP related for example, quality indicators for health care in care homes. WS5: Developing a skilled and motivated clinical workforce: the NE Dementia Academy (18-60 months). Contributors: Professor David Burns, Professor John O Brien, Professor Murna Downs, Professor Henry Brodaty (Australia) Introduction: The UK International Longevity Centre (ICL-UK) report, The European Dementia Research Agenda (2011), called for European governments to urgently address the challenges of dementia via the creation of national centres of excellence in dementia research, the development of a well trained, motivated workforce and strong translational networks. International examples addressing all three are limited; however the Australian Dementia Collaborative Research Centres (DCRCs), with their linked Dementia Training Centres, provide such an example. DCRCs target 4 pillars : research, knowledge transfer, training and service development, and work via a hub and spoke model. In the UK, Newcastle University is already recognised internationally as a centre of excellence in dementia research, with strong industry/PPI collaborations. In terms of creating the dementia workforce, national centres of excellence exist (Bradford) but are focused on carehome and nursing staff. In the NE, Newcastle Biomedicine has been awarded NIHR funding of 4.5M for a Biomedical Research Unit (BRU) in Lewy Body Dementias; the BRU will host the Newcastle NIHR Training School to train the next generation of translational researchers in ageing research. However a gap remains in developing a skilled clinical workforce of generalist health professionals who can deliver evidence-based health care away from academic centres of excellence and in the heart of where care is largely delivered i.e. patients homes and acute hospital settings. Methods: Development of a Dementia Academy to create skilled and motivated dementia non-specialist clinicians and allied health professionals i.e. pharmacists, occupational therapists. Based on the successful BGS Parkinson s Academy, we would develop a series of educational master-classes. These classes would adopt a holistic approach, with multidisciplinary and PPI involvement, and would be targeted at providers (generalist physicians, allied health professionals) and commissioners of care. Initially they would be piloted and evaluated in the NE; if successful, and following refinement, national dissemination would be planned. (See www.dh.gov.uk/en/Healthcare/Longtermconditions/Bestpractice). The Academy would be situated in Newcastle, on the rapidly expanding Campus for Ageing and Vitality, co-hosted by Newcastle University and Newcastle Hospitals Trust. The Campus has a hugely successful track record in translational (T1) biomedical dementia research, securing infrastructure funding for the Henry Wellcome Biogerontology Research Building (2003), the Clinical Ageing Research Unit (Wellcome/Wolfson funded, supported by NIHR; 2008) and the 5 million NIHR Biomedical Research Centre (BRC) capital bid (2009), which complemented University/NHS Trust investment, for the Newcastle NIHR BRC in Ageing and Age Related Diseases (opening 2011).
Plain English Summary
Dementia presents one of the major care challenges for the 21st century. Professor Robinson’s research aims to
improve the quality of community care for people with dementia and create a skilled and motivated NHS workforce
to deliver such care.