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NIHR Clinical Research Network, West Midlands

The National Institute for Health Research (NIHR) Clinical Research Network provides the infrastructure that allows high-quality clinical research funded by charities, research funders and life-sciences industry to be undertaken in both the NHS and in the wider health and social care environment. We work with patients and the public to make sure their needs are placed at the heart of all research, and providing opportunities for patients to gain earlier access to new and better treatments through research participation. Nationally and locally within the West Midlands we support dementia related research, the promotion of opportunities and in particular the Join Dementia Research initiative which enables members of the public to be made aware of research opportunities which they may wish to be involved in

8 January 2020
West Midlands
Care, Charity, Clinical Commissioning Group, Health, Hospitals and Hospital Trusts, Research Sector, Community organisations, Local DAA Members, Social Care
Local Alliances:
Wolverhampton Dementia Action Alliance, Sandwell Dementia Action Alliance, Birmingham Dementia Action Alliance , Coventry and Warwickshire Dementia Action Alliance, Dudley Dementia Action Alliance, Tamworth Dementia Friendly Community

1. Action Plan

1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

The NIHR Clinical Research Network helps to facilitate and support the delivery of dementia related research.  Our role involves supporting researchers with the delivery of the study, and most importantly, we provide the information and opportunties for members of the public to be informed of current and future research opportunties which they may like to know about and consider being invovled in.  As part of the governments 2020 Dementia Stratagey, the Prime Ministers commitment on dementia set out specific commitments that aim to make England the world leader in Dementia Care, research and awareness by 2020.  These commitments  are, to be better informed about dementia research , to have hope for the future, have knowledge that there is a global effort to find a cure and prevention, increased investment for dementia reserach and for the UK to be the best place inthe world to conduct dementia research.   The networks support in this process will lead to greater understanding of the condition, understand the complexities of living with the condition and the support that is required.  The translation of the results enables organisations  who provide services to support its clients in a manner which is suitable for their needs   .  The dementia statements makes reference to a right to decide to be invovled in research that looks into the cause cure and care for dementia and to be supported to take part. Our service provides this opportuntiy via the Join Dementia Research  www.joindementiaresearch.nihr.ac.uk  intiative plus other opportunties which may arise by working in collabortion with reserachers in the development  and design of studies.   

2. What are the challenges to delivering these outcomes from the perspective of your organisation?

The challenges we foresee are  individuals or organisations reluctant to help promote research opportunties to clients or to be engaged.   This could be due to  not understanding  the research process, its benefits/opportunities, the fear of being invovled and capacity to assist with promotion. Many individuals and organisiations believe that dementia clients and their families  may not wish to know or are uncertain as to when to broach the subject.  

2. Actions

  • Increase awareness and promotion of Join Dementia Research initiative across the borough and surrounding area and increase number of volunteers on the system

    As part of the Governments Dementia Strategy, one of its objectives is everyone should have the chance to participate in research and to increase the number of people participating in dementia research .  The aims are that every diagnosed person and their carer will receive information on what research opportunities are available and how they can access it through Join Dementia Research, that all  relevant staff will be able to signpost interested individuals to  research via Join Dementia Research, that  25% of people newly diagnosed with dementia will be registered on Join Dementia Research and that   10% of people with dementia will be participating in a research study. Nationally we have a target of 100,000. I would like to make the borough a demenita research aware region  

    I believe that raising awareness by either offering  training for staff to feel comfortable in promoting it or just by giving talks/one to one sessions may assist with this. Attendance at community events and meetings will also be beneficial.   By providing the support we will  to increase the numbers of volunteers  who sign up within this region and  also raise  the awareness of dementia related research.

    Local and national volunteer recruitment data can also be shared with the members .

  • Attend networking meetings to share dementia related research information and opportunities to be involved.

    By attending the networking meetings I will advise those in attendance of the opportunities to be involved in dementia related research.  This can be achieved either by verbal presentations, PowerPoint presentations or hosting a stand with literature and computer access to research opportunities.  The rational of being involved in research will also be discussed with the intention of breaking down the stigma of being approached and being involved in dementia related research. Examples of the types of research will be shared.

  • Undertake dementia friends awareness training

    I will attend a dementia friends awareness training session (refresher ) in order that I am up to date with my understanding on how to support and interact with individuals, carers and friends of those who have a dementia diagnosis.