We have been attempting to engage with the public in a number of ways recently. The first was via having a stand at an Alzheimers Care Show in London, not quite the same as the Care Show at the BIC which targets those working in the care world (we had a stand there too and lots of interest, but in a business sense), the show in London was different in that it was advertised and open to anyone interested in dementia. The organisors sold hundreds of tickets in advance to those working in the field but tickets were on sale on the day for anyone worried about their memory or their family members. This was a slightly novel approach and on the second day, a Saturday, there was a lot of footfall from people directly affected by dementia rather than those working in the field (who swarmed in on the first day). It was interesting to hear this audiences views about what Universities should be doing to address their concerns, and is an area that vexes me as we are not a campaigning organisation, nor are we a service, but we clearly need to engage with and work to our key stakeholders agendas and concerns to be having genuine impact. Training professionals working in the field is an obvious one (and the key issue raised at our own local carers forum last year) as was the need for more information to sign post people along their dementia journey (and is one of the areas Claire House-Norman and her team are currently fundraising for). However one of the big issues raised was the need to challenge perceptions about dementia, the assumption that people with dementia are less able, lost, require ‘special’ treatment that results in marginalisation and stigmatisation. Now this aspect was really interesting to us in BUDI as we also have an arts and dementia project on the go at the moment where we are collecting written accounts from people with dementia and the general public about what they think dementia is/means to them and peoples’ views and experiences about dementia; this will be exhibited at the Festival of Learning in June. Standing windswept at Bournemouth beach this weekend – one of our general public venues (we, BUDI staff and volunteer BU students, have been all over in the last week with further venues this coming week, for examples in supermarkets, shopping centres, hotels, sports centres, libraries, and schools) it struck me how many people steer away, physically and mentally, from the word dementia. Our pop ups and papers blowing around in the wind at the beach attracted attention and laughter from passing members of the general public as we raced around to pick stuff up and tie it down, and did result in some people stopping to talk about and write about their experiences/thoughts. Free sweets also pulled in teens and families to stop and talk but to not necesssarily write as they didn’t know what dementia was or didn’t want to write down their experiences. Also some people stopped, read the sign and made comments about dementia and did a physically body swerve. We also got a lot of people who did stop and write about their views and experiences (and we are currently at about 400 stories in total) but there seems to be a general fear? aversion? negativity? to the word dementia which makes our arts project even more important as we are trying to get people to think about dementia and question and challenge the negative stereotypes that abound about this condition. Engaging with the public about issues perceived as ‘difficult’ in some ways isn’t easy, nor is it easy to find practical ways for our University based work to have real impact, but we have started the journey and are open to any creative ideas others might have about how else we might go about engaging!
Tagged / dementia
The BU Dementia Institute is growing fast with staff or students involved in various ways from all BU schools. We have a short term secondment opportunity (3 months) to work with us as Project manager to help develop our profile, income streams and to work on selected existing projects. Interested? Take a look at http://www.bournemouth.ac.uk/jobs/hsc184.html and drop me an email if you would like to discuss email@example.com
BUDI continues to work towards a truly collaborative approach to dementia and with this in mind our first internal conference will take place on the 31st January. The theme of this conference is creative collaboration. We are keen to explore new innovative approaches to all aspects of living with dementia and caring for people with dementia. If you have an idea or a piece of work that you think could work well or has a potential link with dementia, then this is the opportunity to showcase your idea. Abstracts are invited for posters and presentations and should be submitted by Friday 16th November at 12noon.
Abstracts should be no longer than 250words and the details can be found on the staff development page.
Presentations will be 10mins duration with five minutes allowed for questions.
Posters should be of A0 portrait size and an award will be given for the best poster on the day.
More to follow shortly.
Project Manager BUDI
Anthea’s inaugural, to be held on 14th November, entitled “Dementia: personal journey to policy priority” is currently fully booked. If you would like to be added to the waiting list please send an email to Michelle O’Brien at firstname.lastname@example.org.
BUDI are also holding a BU internal conference entitled “Creative collaboration” on 31st January and would welcome your attendance (please see BUDI website http://blogs.bournemouth.ac.uk/dementia-institute/ for further details or contact Patricia McParland, BUDI Project Manager on email@example.com.)
October is the month of the annual Alzheimer Europe (www.alzheimer-europe.org) meeting. This year three BUDI team members attended the rather nice setting in Vienna a draw for everyone, although we all had very different agendas and expectations. Alzheimer Europe is one of my personal favourite conferences as I’ve been going for years and it creates the opportunity to meet with new and catch up with a range of international colleagues, and is actually the main reason I go to these kind of events; yes it is good to present the work, and as a team we had two posters and three oral presentations this year, which is not bad for an Institute only in existence for 6 months, but it is the networking aspect that provides inspiration and creates new ideas and new collaborations that motivates me to go to these kind of events.
Patricia McParland is BUDI’s project manager, she has presented at a few dementia conferences in the last 3 years but for this conference her main concern was to ensure her cutting edge work doctoral work, that she is in the final throes of writing up, on public awareness of dementia is getting out there as this is an area of increasing policy concern both in the UK and internationally and many are starting to work in this particular area. As well as presenting a poster on her doctoral work that received positive attention, she presented a paper reporting on one of BUDI’s project about Dementia Friendly Tourism. The concept of Dementia Friendly Tourism has caught the imagination of many we speak to about our dementia work and this proved to be the case again in Vienna. Colleagues from France, Spain and Jersey were particularly interested in this project and keen to explore how these ideas could be applied to their regions; we will see what transpires over the coming months in the way of collaboration but this is a nice example of the added value of going to a conference.
Clare Cutler is a research assistant in BUDI and has just started her PhD exploring experiences of war and dementia, as an Early Career Researcher Clare was thrilled to be attending her first interational conference, and her excitement was contagious! but she was also rather anxious about giving her first presentation on one of BUDI’s projects, GRIID, Gateway to Rural International Innovations in Dementia, on behalf of an international team. She needn’t have worried as she went down a storm; mainly because she said at the beginning that she was nervous, this was her first presentation and then let out a big sigh as she finished. This created a huge amount of goodwill to her personally as well as her giving a presentation on an innovative interational partnership project. We had received the support of Alzheimer Disease International (www.alz.co.uk) to conduct part of this study and the opportunity for further discussion about working together to target rural areas and developing countries is another of the added value benefits that being in Vienna brought for me this year.
I presented a paper on a recently completed evaluation of a telehealth project to diagnose and follow up people with dementia living on the Shetland Isles and Grampian, rural areas of Scotland. The added value of this work relates to the INTERDEM (www.interdem.org) meeting that was held the day before the conference. (This is another example of added value by the way, going to other meetings around a conference.) Interdem is an application/invite only pan European network of highly active psychosocial researchers in the dementia field; as a member I was also able to take my BUDI colleagues in their student roles, a new doctoral and just about to complete doctoral student, to this full day meeting and they found this an amazing experience as many of the ‘names’ of long established dementia academics are part of this group which is always a buzz to meet people you’ve quoted for the first time, who offered real warmth, enthusiasm and support for their work. The Interdem meeting this time round was a mix of presentations (including one from the task force on technology and dementia that I co-lead) and working groups developing bid ideas, collaborative papers and general brain storming about how to take forward new work in the field. The technology task force has been working on a bid around exergaming and dementia and we used the lunchtime slot to meet to work up our ideas further (more added value) as well as updating Interdem members about our progress with this bid during the meeting itself. But we also discussed new bid ideas and telehealth, the focus of my Alzheimer Europe paper, was one of the favoured topics; one of our jobs now is to see the details of a long-awaited funding call (JPND) due out December 2012 and get writing another EU bid. We also agreed to write a collaborative paper on technology and dementia, but a successful meeting is one that generates new work from my point of view!
My other bit of dissemination work was a poster about ongoing research evaluating dementia care in Maltese hopsital wards. The added value about this relates to the conference venue being in Malta next year and I am sure this has partly influenced the invitation, of the Maltese Dementia Society member who is a long standing collaborator of mine as well as being the local organisor for the 2013 meeting, for me to give a plenary there next year!
So in all, the value of going to conferences for new researchers, is undoubtedly to present their work, to meet esteemed colleagues and the resultant ‘buzz’ this brings, to learn about other research in the field and to start their own networks (a good example of this is Patricia joining a writing team for a methods related paper, more added value!). For me it is a chance to catch up with people and to discuss potential new collaborations. In previous years it has also been about keeping a profile of the work of my team, this year it was about starting to create a profile for a new BU team to an international audience. I am pleased to report that all boxes were ticked this time round!
On Monday 10 September Bournemouth University Dementia Institute (BUDI) held our second public engagement event (the first was back in May when we held a public meeting that also served as the launch of our Institute). The focus this time was on hearing the experiences of carers of people with dementia from across Dorset with the aim of finding out what they felt were the key issues terms of dementia services locally; and also to gather their views about future work that BUDI should prioritise that could be captured under our remit of research, service evaluation, consultancy and education.
The carers were very open and shared their experiences of getting a diagnosis for the person with dementia from short (minority of examples) to protracted and difficult journeys (this is sadly a common finding across the UK and beyond). There were lots of examples of difficulties encountered after receiving a diagnosis too; a lack of peer support, a lack of sign posting to follow to help access help and support, a lack of concern from service providers. There were positive examples too, with specialist dementia care units being a marked improvement compared to general hospital wards and agency staff coming in to the person with dementia/carers own home to deliver personal care. What is remarkable, and again from previous research, if the creativity and perseverence carers display in finding help, finding practical solutions to the challenges of caring, finding activities that are meaningful and enjoyable for both carer and the person with dementia, I say remarkable as the absence of help and support for commonly reported problems is something that really needs to be addressed. Local clubs run by the Alzheimer’s Society and AgeUK were really valued by carers but had often been found after considerable difficulty, this might partly explain why carers were telling us that they would like more sign posting, in the words of one carer ‘a hitch hikers guide to dementia’, something that provides a short checklist with more detailed information to follow up on if requried. This was said within the context of acknowledging the wealth of information available on the internet and via service providers, but this is a maze to navigate and what carers in our forum said was that they needed the information in a simple and more accessible format.
When we asked carers what they thought BUDI should be focusing our work on, they had some really interesting things to say: ‘more opportunities to talk like this’ being one, the idea of public engagement and having a chance to have a say was something they really valued. Ideas for training courses we should run to address the lack of knowledge about dementia from care providers they had encountered were readily given. Ideas for research projects focusing on carers needs, activities for people with dementia and carer support and general information giving have given us food for thought in how we turn these ideas into research projects that can be matched to funding opportunities.
We knew from previous experience of working with carers that it was important to have space for their relative with dementia to also be able to attend. In the end, of the eleven carers who participated, four brought their relative with them. We had organised a separate room with BU colleagues experienced in working directly with people with dementia offering a range of activities as well as the opportunity to share their experiences and thoughts about memory loss and what they felt was important about living with dementia; the discussion highlighted the importance of family and being able to talk to peers – the space we had created during our carers forum offered the opportunity to have this peer discussion. The activities that we offered that were most popular with those with dementia were Apple I pads and Nintendo DS games, technology that is often rarely offered to people with dementia based on negative expectations of the ability of people with dementia to be able to learn new skills and to engage with gaming technologies (something we are addressing via a technology club we are running for Bournemouth Council).
Engaging with a range of stakeholders is one of BUDI’s aims; we want to work in partnership with local people, to develop collaborative ways of working and to engage with local issues – after all one of our aims is to make a real contribution to improving the lives those affected by dementia. Our next engagement event is likely to bring together different stakeholders, carers, people with dementia, service providers as well as our academic community at BU working in this field. This is necessary as an academic institution can’t often deliver practical solutions directly, rather we need to find ways to influence and inform policy and practice based on our empirical work, but to do so requires acknowledging and embracing the starting points and concerns of those most directly affected by dementia, those with the diagnosis and those who provide the support and care.
The Prime Minister has announced plans to tackle what he is calling a ‘national crisis’ posed by dementia, including a doubling of research funding into dementia to £66 million per annum by 2015. As part of the funding being made available, the ESRC and National Institute for Health Research (NIHR) will be working together to support an initiative with up to £13 million funding available for social science research on dementia.
The initiative will fund large grants which will be national or international focal points for social science research in Dementia which make a significant contribution to scientific, economic and social impact. The call will address the following areas, see Research Agenda (PDF, 71Kb) for full details:
- Prevention, including public awareness and early presentation
- Public health of behaviour change, including the role of social interventions in slowing cognitive decline
- Delivery of interventions in hospitals care homes and carers, including the interface between professionals, lay people and patients
- Call specification (PDF, 198Kb)
- Guidance notes for applicants (PDF, 275Kb)
- Guidance for applicants on involving patients, families and carers (PDF, 151Kb)
- Examples of career development and capacity building (PDF, 64Kb)
- Additional costs proforma: NHS support and treatment costs (Word, 143Kb)
- Presentations from 3 July meeting for potential applicants (PDF, 1.2Mb)
- Frequently asked questions (PDF, 144Kb)
- Meeting for potential applicants – 3 July 2012
- Launch/open call – w/c 9 July 2012
- Closing date for outline call – w/c 11 September 2012
- Announce decisions for outline call – mid December 2012
- Closing date for full call – February 2013
- Inviting short-listed applicants for interviews – June 2013
- Interviews – June 2013
- Announce final decisions – July 2013
- Prime Minister’s challenge on Dementia (Department of Health website)
- National Dementia Strategy (Deptartment of Health website)
- Ministerial Advisory Group on Dementia (Department of Health website)
- Strategic Research Agenda for the Joint Programming Initiative on Neurodegenerative Disease (JPND website)
- Lifelong Health and Wellbeing: Strategy for Collaborative Ageing Research (MRC website)
For further information please email: firstname.lastname@example.org
The RKE Operations team can help you with your application.
Week commencing 18 June saw me attending a research retreat at the University of Saskatchewan, Canada, building on successful collaboration with Canadian colleagues (via 2 CIHR development grants) established around 5 years ago my colleague Professor Debra Morgan is now leading a large programme grant application to the Canadian Institutes of Health Research (CIHR) which would allow for comparative work to be conducted in Dorset and Canada around community based dementia services. As well as academic meetings discussing the content, focus and budgetary implications of the programme of work there was a one day ‘Stakeholder’ event where decision makers debated the merits of the four strands of the programme of proposed work. This was a fantastic example of public engagement in writing a programme grant and the opening presentation I gave about the UK dementia strategies and implementation plans were very well received. It is always good to have synergy between work going on in different places and to learn from one another. Canadian colleagues were very complimentary about the policy level work that has been established within the UK, but some of the practical initiatives occuring in rural Canada are very much at the forefront of quality dementia care provision. Here’s hoping we secure the grant award!
14 June saw the first BUDI University wide dementia meeting. Over 30 people attended from different BU Schools (Tourism, DEC and HSC). Apologies were received from 10 other BU staff members who were unable to attend the meeting but are keen to be involved in BUDI activities relating to dementia research, education and practice development.
Professor Anthea Innes, Director of BUDI, welcomed everyone to this inaugural meeting. She shared the already extensive progress to date of BUDI, but stressed the need for working collaboratively with colleagues across the University to enable the development of interdisciplinary teams for future larger research bids and other activities. “This is an excellent opportunity to share our resources and expertise” said one of the participants. BUDI aims to become the signpost for all work BU undertakes in relation to dementia. Professor Steve Page from the school of Tourism added that the emphasis of BUDI was on collaboration and for it to be the focal point of dementia research and not to take control of individuals’ dementia research, he sees it as an excellent opportunity to apply his area of expertise, health and leisure, to a new area. There is huge potential for staff across the University to work within BUDI, and to showcase their projects and publications via the BUDI website. Meeting participants agreed to forward relevant information on to Clare Cutler who is working on the BUDI website with Matt Northam from the Media School.
The meeting clearly demonstrated the range of work being undertaken across the University and the huge potential for collaboration for future funding bids. Three short term working groups were agreed to take forward initial collaborative activity across BU:
- Dr Simon Thompson from DEC has agreed to take the lead on organising a working group to develop a bid for a series of events for the forthcoming BU Festival of Learning call.
- To facilitate further sharing of information the idea for a conference to disseminate and share work in the dementia field with colleagues across the University was agreed and will be taken forward by Anthea Innes with the BUDI team in the 2012/13 academic year;
- A carers forum is being planned for early Autumn, Dr Marilyn Cash from HSC will co-ordinate this working group.
The group has agreed to meet 3 times a year as a large group to share progress and plans, with working groups meeting according to individual project demands. All BU staff who are interested in dementia and want to join the meetings or to explore the plans for any of the working groups please let Michelle O’Brien, BUDI’s administrator know so you can be added to our mailing list.
If you want more information about BUDI or any dementia related activities undertaken at the University, look at the BUDI website.
You may already be aware that we have recently seen the launch of Bournemouth University’s Dementia Institute (BUDI), more details of which can be found on the Health and Social Care blog and BUDI’s website. This event brought together nearly 100 participants, two thirds of which had a professional interest in dementia, with a considerable proportion of the remainder attending for more personal reasons.
Encapsulating BU’s Fusion concept (with inclusion of research, teaching and practice), the launch event brought together what has been described as the three sides of the public engagement triangle. This includes transmitting (sharing results of previous research on dementia through presentations), receiving (learning from practitioners and service users about the key research issues) and collaborating (creating a dialogue to inform future research).
Part of BUDI’s key driving force is the need to promote high quality care and support for the population for dementia. Therefore, the process of public engagement is particularly important for BUDI, as it considers a key issue for Dorset – why does the county have the lowest level of dementia diagnosis, despite its elderly population? Currently available data does not provide an obvious answer to this, and it is likely that only by working with key stakeholders and the at risk population, that insights may be gained into this startling statistic.
BUDI Director, Prof Anthea Innes’ opening talk (What does dementia mean to you?) brought together some of her findings from her esteemed research career in a way that was accessible to the audience as a whole, but also sensitive to those for whom dementia is a highly emotive subject. Michele Board – a Senior Lecturer in the School of Health and Social Care and a senior nurse in the memory clinic at Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust – then gave a powerful account of insights into how the individual’s experience can be improved from her experience of working in the memory clinic. Again, this was informative for those of us with limited knowledge and for the more expert attendee. The final part of the event focused around a panel discussion, chaired by Prof Gail Thomas, Dean of the School of Health and Social Care. Alongside the speakers, the panel included Karen Cosgrove from Alzheimers.org.uk and Steve Collins from Age UK who with their extensive practice experience helped generate a lively discussion, where knowledge was exchanged and attendees were able to flag up areas of potential future research.
During the launch, I had a strong sense that the event was enabling a genuine process of public engagement to occur between our academic community, practitioners and other key stakeholders. I am therefore, delighted to learn that the results of the event evaluation demonstrate that this was very much the case for many of the participants. I know that BUDI are planning far more public engagement activities, which is I think will be both hugely positive for the progression of the research, for those involved in professional practice as well as for those affected by dementia, both patients and carers. As an academic institution, we perhaps uniquely positioned to be able to bring such a range of stakeholders together, share world-class research, learn from those that are directly impacted by research findings and develop a research agenda that we can be confident is relevant to our fast-changing world. If you would like to know more about why it worked so well or are interested in learning more about how you could develop public engagement activities around your research, please do not hesitate to contact Dr Rebecca Edwards on email@example.com, or for more information about BUDI contact Professor Anthea Innes on firstname.lastname@example.org
On the 25th May 2012 Southampton Solent University hosted an annual Alzheimer’s Research UK (ARUK) public awareness event. BUDI (Bournemouth University Dementia Institute) was invited to set up a display and provide information about BUDI’s services and research. Clare Cutler from BUDI, along with scientists and clinicians from the local ARUK network demonstrated and provided information about Alzheimer’s disease and other dementias, current treatments and the latest research. The event was attended by many members of the public, carers and students. BUDI was able to provide information about the services it can provide and insight from ongoing research. The day was very well received by the public and was said to be an ‘excellent event”.
Bournemouth University Dementia Institute (BUDI) was launched at a public open meeting on dementia on the 16th May. See our fledgling website for more details: www.bournemouth.ac.uk/dementia-institute
A University wide meeting open to all staff interested in working in the dementia field will be held on Thursday 14 June at the Business Centre (EB708) 10-12 followed by opprtunity to network over a light lunch. If you would plan on coming along can you let Michelle O’Brien know (email@example.com) for catering purposes.