National Institute for Health Research Dementia Research Workshop 14 January 2011

National Institute for Health ResearchDementia Research Workshop

14 January 2011

The Ministerial Advisory Group on Dementia Research

Chair: Professor Alistair Burns National Clinical Director Dementia

Department of Health

NIHR Dementia Research Workshop

14 January 2011


14 January 2011

Priority Topics for Dementia Research

Professor Chris Kennard Chair, MRC Neurosciences and Mental Health Board

& University of Oxford


14 January 2011

Membership and process

Membership• Research Councils• Govt Depts• Research Charities• National clinical networks• Expert chairs of Cause, Care, Cure sessions from 2009 Ministerial

Dementia Summit

Discussions of the Subgroup were informed by:• the 2008 MRC Strategic Review of Neurodegeneration Research• the 2009 National Dementia Strategy• updates from Subgroup members on current research activities• outputs from the Ministerial Dementia Summit held in July 2009


14 January 2011

Priorities identified (1)

Understanding disease mechanisms and progression• to promote the development of new therapeutic strategies

• genetic and molecular pathways & interaction with the environment

• interaction of pathologies across the dementias

• predictive animal and cellular models - biomarkers of disease development and progression will be critical to this

• long-term promise of stem cell research for therapy, though in the near-term its impact will be in disease-modelling

• what is the most beneficial time-window for treatment efficacy?

• increased donation of brain tissue is needed, tied to detailed clinical data


14 January 2011


Longitudinal population studies• to increase our understanding of the ageing process, and to identify

the risk and protective factors relating to dementia.

• near-term opportunity to better utilise existing population studies

Recruitment of research participants• creation of a national register of patients?

• routinely provide the patient with the opportunity to be asked to participate in research at the point of diagnosis?

• to increase clinical studies of people with mild cognitive impairment, need to address challenges of undertaking multi-centre studies, and the regulatory issues relating to the use of surrogate markers

• stratification of study participants, to separate out the various dementia sub-types, to better target and evaluate intervention studies.


14 January 2011

Priorities identified (3)Prevention strategies• key preventative factors include a healthy diet, promoting physical

and cognitive activity and controlling cardiovascular risk factors -promotion through public health interventions focused on 'healthy body, healthy mind'?

Behavioural and psychological symptoms and interventions• increase focus on research into behavioural and psychological

symptoms, particularly with regard to managing challenging behaviour and improving quality of life.

• need better evaluation of non-drug interventions for behavioural disturbance, including improved training in care homes.

• translating efficacious psychological and non-drug interventions to real-world settings

• evaluation of the impact of care received by people with dementia in general hospitals.


14 January 2011


Promoting research in care homes• to address comorbidity, especially in relation to vascular disease,

and to improve the physical health of patients with dementia

• research into falls prevention

• assessments of the effectiveness of interventions undertaken by carers - improved outcome measures are needed.

• the development of research networks in this sector would assist access to research populations and encourage care homes to share expertise and information

• relatively little research on end of life and palliative care for people with dementia - current hospice care models need to be developed for transfer to social care settings.

Increasing Public Support and Participation

Rebecca Wood Chief Executive, Alzheimer’s Research Trust

Professor Clive BallardHead of Research, Alzheimer’s Society


14 January 2011


14 January 2011

Workgroup 2

Identifying ways of raising public awareness of, and support for, dementia

research and increasing public engagement in dementia research via recruitment to trials and other studies

or via tissue donation

Workgroup members: Dr Craig Ritchie, Joe Korner (Stroke Association), Steve Ford (Parkinson’s UK), Professor James Goodwin

(Age UK)


14 January 2011

Key topics• Communication

• Prevention of dementia

• Engagement of more people in research– Case registers (Work Group 4)– Brain Banking


14 January 2011

Communication• Targeted communications

– Develop specific communications to improve awareness of importance of dementia research– Ensure communications are relevant to all audiences e.g. focus on prevention to engage a

younger audience

• Develop key messages– Messages based on robust evidence– Work closely with journalists and communications experts to refine and improve key

messages and optimise their use

• Communication channels– Utilise diverse channels and communication methods to reach more audiences e.g new

media including social media, audio-visual channels, interactive engagement – Tailor communication channel to target audiences

• Seek partnerships– Develop partnerships with likeminded organisations to strengthen communications– Capitalise on significant overlap between messaging for cardiovascular health and

prevention of dementia


14 January 2011

Prevention

• Develop evidence-based, engaging public health messages

– Exercise, weight, diet

– Proper management of medical risks

• Recognition of role of primary care and secondary services

– Management of blood pressure, cholesterol and additional conditions (depression, diabetes) for primary, secondary and tertiary prevention

– Healthy lifestyle messages

• Explore opportunities for implementation of research into prevention of dementia


14 January 2011

Brain Banking• Clear communication of scientific importance

• Develop strategies to increase number of donors

• Develop as platform for building capacity amongst neuropathologists

• Standardise brain banking processes to enable widespread use of material – Provide a valuable resource to enable researchers to address

the most important research questions

Improving Access for Funding and Support

Dr David Cox Deputy Director, NIHR Research Faculty

Department of Health


14 January 2011


14 January 2011

Improving access to funding

The task

• Identify factors inhibiting access to existing resources

• Consider how partners might address these issues

• Identify potential quick wins

• Work up plans for short term deliverables

• Develop specific proposals for less tractable issues


14 January 2011


Issues considered

• Funding opportunities

• Research capacity and capability

• Organisation and culture

• Infrastructure


14 January 2011


Funding opportunities

Issue: perception that dementia research funding bids less successful • Access to funding: highlight opportunities for different types of

research short term• Access to information/advice on developing more competitive

applications quick win• Advance warning of strategic requirements of calls quick win• Dementia research web portal short term deliverable• Publicise opportunities e.g. this workshop quick win• Communicate importance of dementia for FP7 funding short term

and adequate funding in FP8 longer term


14 January 2011

Improving access to fundingResearch capacity and capability

Issues: specific capacity limitations and shortages of key staff• Increase exposure to dementia research issues e.g. attract clinical

trainees into research at an early career stage (ACF) quick win

• Involve nursing academics in planned dementia workshops short term

• Identify needs for capacity building in key disciplines and settings longer term


14 January 2011


Organisation and cultureIssues: industry links, data sharing, pooling of funds, leadership

• Round table academic/industry/charity discussion on data sharing quick win

• Role for NOCRI (National Office for Clinical Research Infrastructure)

• Suggest to industry targets for new drugs and devices quick win

• Disseminate existing protocols for data sharing quick win

• Map data resources short term

• Charities to discuss partnership on case by case basis longer term

• Leadership – being taken forward by ‘Better ways of working’ group


14 January 2011

Improving access to fundingInfrastructure

Issue: stronger industry links with experimental medicine facilities

• Convene industry brainstorming session also involving charities quick win

Conclusion• We continue to work together to identify ways in which the community

can gain easier access to funding and support.

• The working sub-group has identified a number of quick wins and short term deliverables.

• These actions form part of a wider programme of MAGDR- sponsored activity


10/04/23

Developing Better Ways of Working

Professor Martin Rossor Director, NIHR Dementia and Neurodegenerative

Diseases Research Network

14 January 2011

NIHR Dementia Research Workshop Priority Setting2 ministerial meetings, 4 subgroup meetings with wide representation and broader consultation

Key priority areas identified:• Integration of patient care and research

– Consistent, coordinated local research support networks embedded in core care services

– Prospectively identifying patients interested in research and signposting from core care services

• Research in care homes

• Increasing leadership


Project ManagementKey priorities being developed via project management boards with key stakeholders involved

RAFT(Recruitment and Feasibility Tools)

INTERACT(Integrating Networks and Embedding Research in Clinical Practice)

ENRICH(Enhancing Research In Care Homes)

LEADERSHIP

Project Key deliverables

•Map existing and emerging leadership

• Identified leaders onto NIHR Leadership programme

•Tool kit for researchers and care homes

•Network of research enabled care homes

•Toolkit for development of local registers

•Capability to federate local registers

•Coherent, consistent set of local research networks across country

•Capacity & capability in core services to consent patients to registers

Improving the Impact of Research on Treatment and Care

Barbara Woodward-Carlton Quality Research in Dementia

Alzheimer’s Society


14 January 2011


14 January 2011

Applying the Research

Specific task:

To suggest ways to improve the “translation” of research into better treatment and care by developing stronger links between academics and research “end users” and working with existing bodies to improve knowledge transfer across the health and social care sector.


14 January 2011

MembershipClive Ballard: Alzheimer’s Society

Alistair Burns: National Clinical Director for dementia

James Goodwin: Age UK

Martin Green: English Community Care Association

Joe Korner: Stroke Association

Louise Robinson: University of Newcastle

Noreen Siba: International Longevity Centre

George Tadros: Royal College of Psychiatrists

Rebecca Wood: Alzheimer’s Research Trust

Barbara Woodward Carlton: Lay member


14 January 2011

Outcomes of the group• Two face to face meetings• Three general themes emerged:

key importance of educational curricula

dissemination of research findings

linking research to outcomes• Central role for carers at all stages • Barriers to implementation

make best use of existing infrastructure

absence of mandatory sanctions

need for incentives

lack of awareness with commissioners


14 January 2011

Specific suggestions for translationIn line with the current outcomes focused dementia implementation plan:

General Hospital Care: better dissemination of research evidence for improved care

Reduction of antipsychotic use: dissemination of research evidence

Support for carers: publication of the independent evaluation of demonstrator sites programme

Timely diagnosis: promotion of e-GP resources to primary care, adoption of a screening tool (eg GPCOG)

Care Homes: Training of staff using workforce advisory group

Others: prevention

end of life care


14 January 2011

Next steps

Wider consultation

Harmonisation with NHS and social care architecture

Translation of research in social care

National Institute for Health ResearchDementia Research Workshop

14 January 2011

Documents

National Institute for Health Research Dementia Research Workshop 14 January 2011