Bournemouth University Dementia Institute (BUDI) was represented at the Alzheimer’s care show held at the Olympia in London on Friday 16th and Saturday 17th May 2014. This is a large event at which organisations and businesses showcase what they offer for people with dementia and those who support them. Dr Fiona Kelly, Dr Rick Fischer and Clare Cutler were kept busy at their stand, made distinctive by its brightly coloured banners and tulips. Delegates to our stand heard about the training and awareness work we do, our research, particularly into creating sustainable dementia friendly communities and our consultancy, including advising on dementia friendly design. Dr Kelly’s presentation on Achieving Excellence in Dementia Care stimulated interest both in the topic and in the work we do at BUDI to promote good practice.
Tagged / dementia
BUDI’s 2014 Open Pubilc Meeting
Bournemouth University Dementia Institute (BUDI) held its third open meeting at the university on 14th May, with this year’s theme being dementia friendly environments. The day was well attended by practitioners, family carers, the general public and people with dementia. It started with a lovely buffet lunch sponsored by Alzheimer Research UK, providing an opportunity for delegates to network and to browse the information stands hosted by themselves and BUDI Ph.D. students. The open meeting was formally opened by Professor Gail Thomas who praised the innovative work being carried out by the BUDI team. Delegates then heard presentations from Dr Fiona Kelly on dementia friendly design, Dr Jan Wiener on the use of eye tracking technology to explore navigation skills and difficulties, Kathrin Büter on using computer technology to support dementia friendly design in hospitals. This session closed with a presentation by architect Niall McLaughlin on his work with communities and older people to design care homes that meet everyone’s needs and are inspirational, therapeutic spaces. The final part of the day involved a question and answer session where delegates and presenters discussed some of the issues raised during the day including how to ensure that the concept of good design filters down to those commissioning, designing and using buildings that people with dementia also use. This successful event is sure to have got people thinking and sharing some of what they heard and we look forward to holding similar events in the future.
Free places available for BU staff – BUDI workshop hosted by Museum of Modern Art (MoMA) 21st May 2014
Thanks to FIF Mobility Strand Funding, Bournemouth University Dementia Institute (BUDI) are delighted to be welcoming colleagues from the Museum of Modern Art (MoMA) in New York to Bournemouth University from 20-23rd May 2014. As part of their visit, BU Staff are being invited to join a free workshop. In this workshop MoMA’s specially trained Museum Educators will share their successful model and established approach for making their services dementia-friendly (validated via evaluation from New York University).
This workshop showcases MoMA’s innovative style of education delivery, providing attendees with an opportunity to hear the success of their approach and a practical demonstration in the Atrium Gallery. Staff with an interest in alternative teaching methods and those working with vulnerable groups may be particularly interested in attending. Please also pass on this information to any PhD students you feel may benefit from attending.
Date: 21st May 2014
Time: 11:00 – 15:30
Venue: Talbot Campus
There are a limited number of places available on this workshop for BU staff. To book a place, or for more information, please email mheward@bournemouth.ac.uk or call 01202 962538.
BUDI Open Public Meeting – 14 May 2014
This is a reminder that the BUDI Open Public meeting is tomorrow (14 May) there are still a few spaces available.
This year’s event focuses on dementia friendly environments, how design helps to support people living with dementia. The hospital environments and the philosphy of dementia friendly environments will be covered by external speakers.
To book your free place please go to eventbrite http://www.eventbrite.co.uk/e/budi-open-meeting-dementia-friendly-care-environments-tickets-9876528964
Puerto Rico welcomes a new BUDI
Every year the prestigious Alzheimer’s Disease International conference welcomes practitioners, academics, people living with dementia, medical professionals and clinicians from all over the world to share their latest knowledge, experience and research about dementia careThis year I was lucky enough to attend and represent BUDI at the 29th International Conference of Alzheimer’s Disease International Dementia: Working Together for a Global Solution, hosted in San Juan on the beautiful island of Puerto Rico.
Three abstracts were accepted to be orally presented, so this was a great opportunity to showcase some of BUDI’s innovative research projects to world leading dementia specialists. The three presented projects were the Technology Club (Dementia Care and Technology), Tales of the Sea (Empowering people with dementia) and (Dont) Mention Dementia (Voices of people with dementia and their families).
All three presentations were well received and stimulated discussion and many questions. The feedback I received after my presentations and during the conference was that BUDI’s projects were seen as innovative, creative and great examples of how to engage people with dementia in research and how people with dementia should be at the core of all research.
Above and beyond presenting, I had the opportunity to catch up with Peter, an Australian colleague (who I have been working on the international GRIID research project with for around two years and have never met!) Peter presented the GRIID project (Gateway to Rural International Initiatives in Dementia) at this conference. After his presentation we were able to meet and come up with some really innovative ideas to take the GRIID project to the next level.
To top off a very successful conference, I won a huge kangaroo courtesy of the Australian Alzheimer’s Association. He was unfortunately a bit too big to fit into my case so he to travelled home with another colleague…I wonder if I will ever get him back as he was very cute!
Since returning home I have started to get in touch with some of the many contacts I made at this conference and look forward to potential international collaborations. This conference highlights all the good work currently being undertaken but also emphasises the amount of work we still need to do. I invite you to check out the below clip of Richard Taylor PhD, who presented numerous times at the conference. Richard is extremely funny and has a great approach and attitude to life. It is very thought provoking as he shares his thoughts about living with dementia. http://www.youtube.com/watch?v=lHQfc3KJ9qE.
Clare Cutler, BUDI Project Manager
Progress with making music
This week I went along to the half way point in the rehearsals for the BUDI orchestra and as promised from my first post about this work here is a link to short video clip
(this was rather difficult as I managed to record my clips upside down on my iphone (how is that possible??), as well as create huge file sizes from 30 second clips, but thanks to David Stone in M&C we now have something postable that hopefully gives a bit of a flavour of the sessions- despite my very amateur recording skills! but do come to their performance on 14 June at the Winton Life Centre as part of the BU FOL!)
My observations of the process this time centre around three things – first, the strong sense of a social group that has been created/formed by all involved, from the friendly welcomes, the catch ups over coffee and the general encouragement the group offered each other during the session. Second, I was also pleasantly surprised that carers sought me out to thank us for putting this group together and to share the positive impact they had observed themselves during the sessions on their relatives with dementia, but also how friends and family at home had also remarked on a positive visible difference in their relatives. 5 sessions and observed differences – is this the power of music? I was also struck by the questions asked of me about ‘would the group continue’ and as with any short ‘intervention’ type study feel the weight of not being able to promise to deliver again on something that is being hugely enjoyed by participants (and which we all hope will evaluate positively in a research sense – but only time will tell…). I guess this lack of being able to promise to continue with a service is kind of like service providers with limited budgets and short term initiatives… Hopefully we will secure funding to enable this work to continue, as even the community musician from the BSO with huge experience of outreach work feels this is a ‘very special’ project with amazing and fast results that everyone involved is observing. From week 1 where participants were nervous about trying out the instruments to now being very comfortable with playing around with (lots of experimentation in terms of how to hold a violin in a comfy position) and actually playing the notes. I was also struck by carers telling me of their attempts to ‘practice’ at home – downloading or recording the pieces they have been introduced to during the sessions and singing, humming and dancing along at home – as unfortunately the violins cannot go home with the participants – and how enjoyable they are finding the sessions beyond coming along to the rehearsals themselves. My final observation is also the growth in confidence of the musicians, our students as well as those with dementia and their carers in how they relate to one another, how they try out new pieces and are no longer as hesitant to experiment as they were in the first session. The combination of body percussion, instrument playing and singing that the musicians have created by paying close attention to how everyone responds has led to a session format that is uplifting, fun, creative while also creating intense concentration amongst all participants as they learn and work together. I wish I could find time in my diary to attend all the sessions as they leave me feeling upbeat and positive; something that was clearly evident not only from what I observed but from what I was told by everyone in the session yesterday.
Free places for BU staff at Museum of Modern Art (MoMA) workshop 21st May 2014
Thanks to FIF Mobility Strand Funding, Bournemouth University Dementia Institute (BUDI) are delighted to be welcoming colleagues from the Museum of Modern Art (MoMA) in New York to Bournemouth University from 20-23rd May 2014. As part of their visit, BU Staff are being invited to join a free workshop. In this workshop MoMA’s specially trained Museum Educators will share their successful model and established approach for making their services dementia-friendly (validated via evaluation from New York University).
This workshop showcases MoMA’s innovative style of education delivery, providing attendees with an opportunity to hear the success of their approach and a practical demonstration in the Atrium Gallery. Staff with an interest in alternative teaching methods and those working with vulnerable groups may be particularly interested in attending. Please also pass on this information to any PhD students you feel may benefit from attending.
Date: 21st May 2014
Time: 11:00 – 15:30
Venue: Talbot Campus
There are a limited number of places available on this workshop for BU staff. To book a place, or for more information, please email mheward@bournemouth.ac.uk or call 01202 962538.
Please be aware that spaces for this workshop are limited, and will be allocated on a first come first served basis.
BUDI – Hot in Malta
In October, five members of the BUDI team attended the annual Alzheimer’s Europe International Conference 2013, hosted on the very beautiful (and very hot) Island of Malta. This annual conference attracts practitioners, academics, carers, people with dementia, medical professionals and clinicians from all over the world.
This year Bournemouth University was represented by the BUDI team who were accepted to present four oral presentations (Ben Hicks, Clare Cutler, Anthea Innes and Derek Eland) and one poster presentation (Clare Cutler) showcasing some of BUDI’s innovative projects (Technology Club, Tales of the Sea, Malta Hospital Care, (Don’t) mention Dementia and War and dementia).
In addition to the presentations, BUDI was also invited to exhibit the (Don’t) Mention Dementia project in the main foyer of the conference suite. The exhibition attracted many people who filmed and photographed the exhibition. Some people were physically touched by the stories and enquired about how this method could be replicated in other countries to give people with dementia a voice.
On the last day of the conference our very own Anthea Innes was invited to provide the closing conference key note speech. Anthea’s presentation touched on many of the challenges faced by people living with dementia and stressed that there is still much important work to do to make our societies dementia friendly to enable those living with dementia to live well with dementia. Whilst the presentation focused on the hard times ahead, it was concluded with a wonderful feel good message (provided by the voices of High School musical) that ‘we are all in this together’! This got a lot of laughs and was a great way to end the conference.
Above and beyond presenting we were given the opportunity to network with world leading dementia specialists at the annual INTERDEM evening meal and the Alzheimer’s Gala dinner (which had a very good band although you couldn’t really understand what the singer was saying, but never the less, you could hum along to the tune). The Gala dinner was preceded with a special visit to the Maltase Presidents summer palace, where the delegates were taken around sections of the very old and very beautiful house and gardens.
After much hard work presenting, networking, and profiling BUDI and BU, we ended the conference with an evening relaxing on the beach and a bit of a boogie in a local bar!
Since being home we have started following up contacts made at the conference and look forward to some potential collaborations.
Clare Cutler, BUDI Project Manager
What can a University community contribute to a Dementia Friendly Society? Being a friend is a start!
In what proved to be a very busy few months of engaging with the public to try and raise awareness of dementia, BUDI held its first Dementia Friends Training session in September. People with dementia sometimes need a helping hand to go about their daily lives and feel included in their local community. The Prime Ministers Challenge and the Alzheimer Society national initiative – Dementia Friends – is giving the general public an understanding of dementia and the small things they can do that can make a difference to people living with dementia – from raising dementia awareness in customer-facing staff to spreading the word about dementia. http://www.dementiafriends.org.uk/
20 BU staff and students responded to the invitation to take part and the training was delivered by one of BUDIs research collaborators Ian Sherriff at Plymouth University, who is also a Trustee of the Alzheimer Society, and a member of one of the Prime Minister’s national Dementia Working Groups. Friends’ information sessions are run by Dementia Friends Champions, who are volunteers who have taken the Dementia Friends Champions’ training. The Friends’ information session lasted around one hour and we learnt more about dementia and how we can help to create dementia friendly communities in our working environment and in our local community. The session was good fun and made everyone realise how they can contribute to making the lives of those living with dementia easier.
Professor Anthea Innes and BUDI PhD student Ben Hicks were so inspired by the friends training they have agreed to become Dementia Champions to help train more BU staff and students to become dementia friends. The one-hour training session is free and will be offered at different points in the year to any BU staff or students who want to become a Dementia Friend. If you are interested in becoming a dementia friend and want to make a positive difference to people living with dementia in your community please contact Michelle O’Brien to book your place (Email: mobrien@bournemouth.ac.uk Telephone: 01202 962771)
Find out more about the Ageing, Society and Dementia research theme
The 2013/14 academic year sees the launch of a new BU research theme, Ageing, Society and Dementia. This new theme brings together the ageing component of the previous Health, Well-Being and Ageing theme with the body of work that has been emerging from the Bournemouth University Dementia Institute. This new theme is not just a result of internal activity and interest in the subject but reflects the external policy drive, nationally and internationally, to respond appropriately to the ever increasing numbers of people who will be affected by dementia worldwide. Thus, this new theme is a direct response to one of society’s big challenges – an ageing demographic and a shrinking pool of family members and paid workers who will be available to support this population.
To give a very brief overview of the considerable activity in the 2012/13 academic year in the area of dementia is challenging, mainly as the cross-school and inter-disciplinary Bournemouth University Dementia Institute (BUDI) team have secured 25 externally funded projects since its launch in May 2012, as well as several internal awards for projects via BUs Fusion Investment Fund and 6 dementia PhD studentships. All BUDI’s work falls under five sub-themes of Service Improvement; Dementia Friendly Environments; Dementia Friendly Leisure; Education and Leadership; and Public Awareness and Knowledge Translation. One of the key areas of public awareness raising activity was featured at the Festival of Learning via an art exhibition collating 600 stories from people with dementia and the general public about their experiences and perspectives on dementia. We were lucky enough to secure the support for this event from one of the Alzheimer Societies ambassadors, Angela Rippon.
Improving public awareness about dementia is a challenge, and at BU our unique team, many of whom have approached the study of dementia for the first time in the last few months and who bring alternative ideas and approaches to the table, is key to our future success. We are working in partnership with EU colleagues via ERASMUS MUNDUS funding to develop a new Masters programme ‘Innovations in Dementia’; we have multiple ongoing projects to see through to a successful completion, and many planned events and several new doctoral students and researchers joining the team in the next few months. However our key challenge for the next academic year is to secure high quality research grants and other income streams to ensure we continue our fused approach of education, research and knowledge exchange/practice development to enable this theme to flourish from its successful but very small beginnings.
Prof Anthea Innes
School of Health and Social Care
Sign up to the Ageing, Society and Dementia BU Research Theme here:
ups and downs of engaging with the public
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!
Want a challenge? short term secondment opportunity @ the Bournemouth University Dementia Institute
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 ainnes@bournemouth.ac.uk
Register Online to attend Bournemouth University Dementia Institute Internal Conference
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
Prof. Anthea Innes Inaugural Lecture
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 mobrien@bournemouth.ac.uk.
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 pmcparland@bournemouth.ac.uk.)
Value of conference attendance?
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!
Carers experiences to inform direction of dementia work at BU
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.
ESRC/NIHR Dementia Initiative
Dementia initiative
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.
Scope
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
Documentation
- 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)
Timetable
- 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
Links
- 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)
Contact
For further information please email: dementia@esrc.ac.uk
The RKE Operations team can help you with your application.
Connecting with Canada
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!