Dementia Nursing Research Taskforce (2012 - 2013)

Please scroll down for details of the mapping exercise and priority setting exercise

The RCN is working with the National Institute for Health Research (NIHR) Dementias & Neurodegenerative Diseases Research Network (DeNDRoN) to set up a Dementia Nursing Research Taskforce (in partnership with Dementia UK and Alzheimer's Society), with the purpose of supporting the Prime Minister's challenge on dementia by:

Identifying key nursing research questions to support improvements in patient care in all settings
Establishing writing groups to develop priority research proposals
Developing a plan for building the nurse researcher capacity in dementia

The PM’s Challenge on Dementia will focus on three key areas

Driving improvements in health and care
Creating dementia friendly communities that understand how to help
Better research. This includes a focus on building capacity for nursing involvement in dementia research.

Demential Priority Setting Partnership

The Alzheimer's Society is working with the James Lind Alliance to identify the priorities for future dementia research. The Dementia Priority Setting Partnership aims to identify and prioritise the unanswered questions about dementia from the perspectives of people with dementia, their carers and former carers, health and social care professionals and members of the community. A survey was open in Spring 2012 for a period of four months, which gave people the opportunity to submit all the questions about dementia that they wanted to see answered through research. Over 1,500 people completed the survey and over 3,500 questions about dementia were submitted covering the prevention, diagnosis, treatment and care of dementia. More information about this work is available on the Alzheimer's Society website. The far larger than expected response means that the synthesis of this work will take until July 2013 to complete. The priority setting exercise, to develop a number of key nursing research projects in the field of dementia care, will follow the timescale of the Dementia Priority Setting Partnership, and will now take place around mid 2013.

Development of a steering group

Around the same time that the Dementia Priority Setting Partnership was developed, the Prime Minister's Challenge on Dementia called for capacity building in dementia nursing research and asked the NIHR DeNDRoN to lead on this. A small steering group was convened, with one of its first tasks to pull together a list of interested parties. If you are a nurse or healthcare support worker working in the field of dementia research, and would like to be kept informed of future developments, please contact Dave O'Carroll, email: david.ocarroll@rcn.org.uk, with the subject header, Dementia Nursing Research Taskforce

The steering group has the following representation:

Piers Knotting, Denise Wilson, Sarah Tait (NIHR DeNDRoN)
Rachel Thompson, Ann McMahon, Dave O'Carroll (RCN)
Claire Goodman, Vari Drennan, Brendan McCormack, Murna Downs, John Keady (Higher Education Institutions)
Julia Botsford, Karen Harrison- Dening (Admiral Nursing)
Sharon Scott (Marie Curie Palliative Care Research Unit)
Barbara Stephens (Dementia UK)
Dr Louise LaFortune is keeping the steering group up to date with progress on the JLA Dementia Priority Setting Partnership.

Key progress so far

November 2012

The priority setting exercise is mentioned in the The PMs Challenge on Dementia Summary of progress (page 13), as is the development of a paper which seeks the establishment of a network of centres of excellence in dementia care. This paper is being led by Goodman and Drennan. The summary can be found here: http://dementiachallenge.dh.gov.uk/2012/11/08/report-on-progress/

April 2013

Mapping exercise. The Royal College of Nursing (RCN), Dementia UK, the Alzheimer’s Society and the NIHR Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) are working together to explore ways to increase research into dementia care and in particular nurse-led research. This includes a stream of work building on the James Lind Alliance priority setting exercise to develop new dementia care research proposals; and a stream to increase capacity in dementia care research, in particular in nursing research. Bournemouth University Dementia Institute (BUDI) has been commissioned to undertake a mapping exercise, and we would encourage you to participate in the following survey: https://www.surveymonkey.com/s/dementiamapping

May 2013

Dementia priority setting partnership. Please find below a request from the Alzheimer's Society, who are developing a dementia priority setting partnership with the James Lind Alliance. The Royal College of Nursing encourage all of you who are eligible to submit a response as an individual, and we shall also be submitting an RCN response as an organisation. There are therefore potentially TWO actions for you:

Responding as an individual. Please find the list of questions that has been collected from the priority setting exercise (Form A) and a ranking form (Form B). Please read through the questions in form A, and rank the 10 questions you think should be prioritised for research in form B, and send your response directly to Nicola.Hart@alzheimers.org.uk by 31 May 2013. If you are responding as an individual, please state this in the question on page 2, "Name of the organisation that you represent/are a member of (if applicable)"
Responding as an RCN member. If you would like to feed into the RCN response, please read through the questions in form A, and rank the 10 questions you think should be prioritised for research in form B, and send your response directly to david.ocarroll@rcn.org.uk by 24 May 2013. We will then collate and send an organisation response. If you are responding as an RCN member feeding into the RCN response overall, you do not need to fill in page 2 of the Ranking form B, as we shall do this on your behalf.

Future plans

We will send out periodic emails in 2013 to keep you informed of progress and we will be seeking your involvement in developing key research questions and supporting the contribution of nursing, once we have more information from the Dementia Priority Setting Partnership.

In the meantime, if you have any queries, do please feel free to contact either Rachel Thompson, RCN Dementia Project Manager, or Dave O'Carroll, RCN Project Manager (Information and Resources).

Kind regards
Dave O'Carroll, email: david.ocarroll@rcn.org.uk
Rachel Thompson, email: rachel.thompson@rcn.org.uk