Report by Dr Samuel Nyman:
On 20th March BUDI attended the quarterly meeting of the Dementia Action Alliance (DAA). This was held in London at the College of Occupational Therapists. The day primarily consisted of presentations with time for discussion, and attracted members from private, public, and third sector organisations as well as people with dementia and their carers. The morning centred on risk reduction and the evidence for lifestyle factors to increase / decrease the risks of developing a dementia, and depression was a particular factor that was highlighted as an important risk factor. The afternoon presented two new calls to action:
Dementia Words Matter
From consultations with people with dementia, this call to action is to ask that everyone uses appropriate language when referring to people with dementia. We are to use terms such as “person with dementia” or “person living with dementia”. Terms to be avoided include referring to people with dementia as “sufferers”, “demented”, “senile”, or “victims”. Part of being a dementia friendly university will mean using the correct language when referring to people with dementia and not using terms that are likely to offend.
National Family Carer’s Involvement Network
With support of the Department of Health, this network will be to engage and equip carers to raise the profile of the needs of carers and to influence policy and practice. It will also be a resource for carers to support each other. Anyone who is a carer or knows of a carer of a person with dementia is encouraged to join this initiative and help campaign for better support and services for informal caregivers who play a vital role in supporting people with dementia.
BUDI is a proud member of the DAA and is a great place to network with key stakeholders who have an influence on policy and practice.
Last October, BUDI were lucky enough to secure funding from the ‘Inspired by 2012 Health and Wellbeing’ Fund via Dorset County Council to run another round of our music initiative with people with dementia and their carers from the community.
BUDI Orchestra have been working hard for the last eight weeks to bring you a performance this Friday 27th March, and we would be delighted if you could come along and show your support for all they have achieved in such a short space of time.
When? 27th March 2015, 10:30 – 11:30am
Where? The Atrium, Talbot Campus
We look forward to seeing you there!
Report on Meeting of the Higher Education for Dementia Network (HEDN) 17th March, Worcester
On the 17th March, BUDI attended the quarterly meeting of the Higher Education for Dementia Network (HEDN). It was held in The Hive, University of Worcester, a building co-owned by the university and the council. The Network is an open forum with a purpose to share information and innovation across UK Higher Education providers and to influence the provision of education for the current and future dementia workforce. The host institution gives a presentation at these meetings and on this occasion the University of Worcester decided to initiate discussion about their intentions of developing training for academics wanting to specialise in dementia, and dementia trainers working outside of higher education who want more training in how to design and deliver educational programmes. We also had discussion about how dementia could be better embedded within existing programmes across university departments / courses. At these meetings members also have opportunity to share about their latest developments and initiatives. BUDI was able to share about their work in developing a new MSc in Applied Dementia Studies, and the four Masterclasses that we are running this calendar year. BUDI is proud to be a member of this network and national networks such as these are great not only for sharing innovation and good practice but for working together to help shape the UK’s education provision. This network’s most recent way of achieving this was to develop a national curriculum that is now in the process of being implemented.
Sarah and I will be hosting a bake sale in the Talbot Campus Atrium on Thursday 5th March, from 1-3pm, in aid of our 54km trek along the Isle of Wight coastal path this May Bank Holiday weekend. We’re taking on this test of endurance to support the valuable work of Alzheimer’s Society, and to help to make a difference for people living with dementia.
We would like to raise £295 each and we’ve been challenged to reach 50% of our fundraising target by 23rd March 2015. In order to achieve this goal, we would like to invite you to indulge your sweet tooth in aid of a good cause, and join us in the Atrium this Thursday afternoon for cakes and treats!
We’ll have a wide variety of cakes, biscuits, chocolates, and other treats available, along with vegan-friendly, gluten-free, and sugar-free options. If you would like to donate some baked goods for our stall, please contact us at email@example.com or firstname.lastname@example.org to make arrangements.
We’re not putting any prices on our cakes. We want people to donate however much they would like to (loose change also welcomed!). Alternatively, if you would like to donate to our fundraising efforts online, please visit our JustGiving team page at http://www.justgiving.com/teams/IOW2015-BUDI
To give you an idea of what your generosity could mean for people with dementia:
- £5 could pay for one person to attend a half hour session at a monthly Dementia Café, providing information and support for people with dementia and their carers.
- £20 could pay for 100 copies of Understanding and respecting the person with dementia – one of the Society’s most requested factsheets
- £50 could fund a PhD researcher for one day to continue vital research into understanding the causes of dementia, how it can be treated and, ultimately, to find a cure.
- £100 could pay for 4 weekly visits by an experienced Dementia Support Worker to someone affected by dementia offering them one-on-one support to help them feel less alone and to identify the services that could help them.
- £120 could pay to run Talking Point for one day – the Society’s 24/7 online community for all people affected by dementia.
We have already received some very generous donations following our last blog post, and we would like to thank you for your support so far. We look forward to seeing you on Thursday!
Last week, I had the opportunity to attend a one-day seminar hosted by Age Exchange (http://www.age-exchange.org.uk/), at The Kings’ Fund, London, to find out more about RADIQL (Reminiscence Arts and Dementia: Impact on Quality of Life) – a method that uses Reminiscence Arts to improve wellbeing and quality of life in people with dementia.
The day started with an overview of RADIQL, described by the Artistic Director of Age Exchange as “reminiscence empowering people in the present”. RADIQL encompasses two main elements: a structured Reminiscence Arts intervention, and a workforce training programme for care staff working in relationship-centred environments. We were then given an overview of the national context – the recent CQC report ‘Cracks in the Pathway’: the quality of dementia care in health and social services, and a presentation by KCL’s Jo Moriarty on care workers’ views of compassionate care.
The Keynote was provided by Dame Eileen Sills who continued the theme of ‘compassion’ by providing the back-story of ‘Barbara’s Story’, which I’m sure many within health and social care fields will have heard of already. Barbara’s Story is a dramatization created by Guys and St Thomas’ NHS Foundation Trust to raise awareness about dementia among their staff, and show the meaning of ‘kindness’ in the workplace, emphasising the impact that every member of staff has on patient experience. Following the success of ‘Barbara’s Story’, the Trust have since developed as series for use as training materials. You can watch ‘Barbara’s Whole Story’ here (with tissues at the ready!): https://www.youtube.com/watch?v=DtA2sMAjU_Y&feature=share&list=UUbJBh2MFKrX6Lf8bJ7_ZGWQ
The afternoon sessions saw attendees partaking in interactive workshops, demonstrating the activities one might engage with during a RADIQL session. Before the day, attendees were asked to choose whether to be a ‘participant’ or a member of an ‘audience’, i.e. whether to take part in the session, or observe a session from an objective perspective. These workshops were the most insightful part of the day, giving some first-hand experience into how the sessions may be conducted. For anyone planning seminars or ‘how-to’ workshops in the future – I would highly recommend using a similar form of dissemination, if appropriate to your cause, as this seemed to resonate with most of us as an effective and engaging way to demonstrate methods and disseminate research to peers.
The RADIQL method is currently being evaluated by Royal Holloway University London in a three year pilot project funded by Guys & St Thomas’ Charity. More information about the day, and the presentations provided, can be found here: http://www.age-exchange.org.uk/radiql-the-kings-fund/
A paper copy of the interim report and a guide to RADIQL are available in the BUDI office (PG63) if anyone is interested.
BUDI are still looking to recruit people with dementia and their carers to join the BUDI Orchestra, starting Wednesday 4th February 2015 for 8 weeks.
If you know of anyone living with dementia, or caring for someone with dementia, that you think would be interested in joining a music group led by professional musicians from the Bournemouth Symphony Orchestra, then please do get in touch! We are also seeking volunteers with an interest in music (staff or students) to help facilitate the sessions.
For more information, please contact: Laura Reynolds on (01202 9) 62546 or email: email@example.com.
We look forward to hearing from you!
Do you know someone living with dementia in Dorset who likes music?
If so, BUDI would like to invite the person with dementia and their carer to become part of a new BUDI Orchestra starting this January 2015. We would like them to share their musical talents and take part in a music evaluation hosted by BUDI and professional musicians.
We hope to evaluate the effects of a novel music initiative on their daily lives. They will have the opportunity to learn a new instrument, sing, or showcase their existing musical talents to their peers.
No previous musical experience is necessary, we’re looking for people who are willing to come along and ‘give it a go’!
For further information, please contact: Laura Reynolds on 01202 962546, or email: firstname.lastname@example.org.
Please disseminate this notice to anyone who you think may be interested in the project. A PDF flyer can be provided – please email: email@example.com.
Recently, I was fortunate enough to represent BUDI at a one day expert group in Paris for the Fondation Mederic Alzheimer. The foundation was set up in 1999 to promote research into dementia care. The title of this seminar was ‘Technology and Alzheimer’s Disease’ with a focus on Information and Communication Technology (ICT) as a means to support the independent living and well-being of people with dementia and their care partners. A group of experts from a broad range of academic disciplines including psychology, sociology, engineering and robotics were assembled to discuss the topic and outline ways to advance the area..
As expected, when bringing together a group of experts from different academic fields, the discussions were lively and thought provoking. As a PhD student undertaking research on commercial technology and dementia from a sociologist perspective, it was incredibly valuable to hear the train of thought of other academics in differing disciplines. Being part of the event and having the chance to contribute to research along with other esteemed academics (many of whom I have referenced extensively throughout my PhD thesis) was a great privilege and the links made at the event will certainly be beneficial as I finish my PhD and begin my journey as an early career researcher (The food was also incredible- The French can certainly ‘do’ food!). The seminar was recorded and the information provided will be written up for publication in a journal. For those who are interested in reading about the informative and lively discussions, I will post a link on the blog to the paper once it has been published.
On 9th December Bournemouth University Dementia Institute (BUDI) were delighted to welcome Year 12 Health and Social Care students from The Grange School in Christchurch. Putting our local partnership working into practice, the students took part in a Dementia Friends session and learnt about some of BUDI’s recent projects, including the Living Well with Dementia video and the BUDI Orchestra. We hope that the student’s learning will translate positively into their future practice, and were pleased to see that their feedback forms stated they will take the following actions as a result of the session:
• “Help people with dementia if I see them struggling”
• “Correct people when they say dementia sufferer”
• ”Help people to understand dementia”
• “Be more patient”
Dementia Friends sessions are part of a national initiative by the Alzheimer’s Society to raise awareness of dementia within our local communities. The sessions are designed to help people learn more about what it’s like to live with dementia so that those affected by the condition can feel included in their local community. BUDI run regular Dementia Friends sessions, if you would like to find out more please look out for further details on the BUDI website in 2015.
Dr Michelle Heward and Dr Ahmed Romouzy Ali
Last Friday (12/12/14), the BUDI Orchestra celebrated this festive season with a Christmas Carol Concert in the Atrium, Talbot Campus. They performed classics such as, ‘Jingle Bells’, ‘White Christmas’ and a very moving rendition of ‘Winter Wonderland’. The event was a great success and thoroughly enjoyed by both performers and spectators alike.
BUDI would like to extend a huge THANK YOU to everyone that attended the concert, with extra thanks to all of the staff who gave their support so the morning could run so smoothly.
We will be starting a new orchestral group in the New Year. If you know someone living with dementia that might enjoy getting involved with the group, please contact me for further information (firstname.lastname@example.org).
Join us as we celebrate this festive season with classics such as ‘White Christmas’ and ‘Jingle Bells’ performed by members of the Bournemouth Symphony Orchestra, and local people with dementia and their carers.
When? Friday, 12th December 2014, 11am – 12noon.
Where? The Atrium (by Starbucks), Poole House, Talbot Campus.
We’d love to see you there!
For more information about this event, please contact: email@example.com.
The BUDI Orchestra during their final rehearsal.
Dr Michelle Heward, Ben Hicks and Sophie Bushell represented the Bournemouth University Dementia Institute (BUDI) at this year’s National Dementia Congress in Brighton between the 10th and 12th November. This is the UK’s 9th Dementia Congress, organised and hosted by the Journal of Dementia Care. The Congress attracted professionals from a vast array of backgrounds from artists and architects to nurses and social care commissioners with over 200 individuals presenting their work during the event. Highlights amongst the spoken presentations included a fantastic and very moving presentation by people living with dementia and their carers from the Dementia Engagement and Empowerment (DEEP) group and Carers Call to Action and the keynote address by Dr Stephen Judd entitled ‘Making Change Happen’.
For BUDI, additional highlights were the two presentations delivered by our very own Dr Michelle Heward who reported on two of her most recent projects:
- The Dorset Dementia Friendly Communities (DFC) Project Evaluation – reporting on the findings of an evaluation of the first year of activity in the seven localities of the Dorset DFC initiative and exploring how far the Dorset DFC project was able to contribute towards assisting people with dementia to be able to feel supported within their community, and have choice and control of their lives. Click here for the full evaluation report.
- The Social Care and Support Needs of Adults with Concurrent Dementia and Visual Impairment – the aim of the project was to investigate how best to provide care and support for adults living with both conditions in a range of housing settings, and develop evidence-based practice guidance to improve social care and support. Click here for more information about this project.
In addition to the speakers there were numerous stands with information about products and services designed to support people to live well with dementia, poster presentations and additional attractions. The most popular of these appeared to be a cookery demonstration by Peter Morgan-Jones demonstrating a technique to improve nutrition and enjoyment of food for people who have difficulties swallowing.
Two of the most delightful things about this Congress were the number and variety of individuals who were clearly passionate about making positive impact upon the lives of people with dementia and those who care for them and the breadth of innovative interventions designed to achieve this. For more information about this event please click here.
Sophie Bushell, PhD student, BUDI
This year BUDI attended the Annual Dementia Action Alliance meeting hosted in the beautiful Central Hall, Westminster. This meeting brings together a range of dementia stakeholders from around the nation to discuss current challenges faced by those affected by dementia. This year the focus was on access to services through faith organisations and NHS hospitals.
In 2013, 250 nationwide representatives attended this event. This year just over 400 delegates arrived to represent their region and affiliation with dementia. The growing numbers of people attending this national event highlights the ever increasing importance of acknowledging dementia and understanding how this condition will continue to affect the communities in which we live.
The 4th Dementia Action Alliance annual report has just been published and gives details all of the businesses and organisations who have joined the Dementia Action Alliance, locally and nationally. BUDI is a proud member of the national Dementia Alliance and we continue to strive to meet our national targets to ensure that people with dementia are heard, seen and valued.
The use of video within social media (such as YouTube, Facebook, and Twitter) is providing researchers with novel ways of disseminating the findings of research. This is inspiring researchers to think outside of traditional academic approaches, and enabling research to extend to new and wide-ranging audiences. This paper focuses on the Living Well with Dementia project, which was designed to utilise video to raise awareness and challenge gaps in perceptions and understanding of dementia. The project involved filming and disseminating a video featuring people with dementia and carers talking about what it means to live well with dementia. Obtaining the views of people with dementia and carers was considered crucial in terms of portraying the real-life experiences of living with dementia, and enabling these often marginalised voices to be heard. Participants were asked ‘what is your experience of living with dementia?’ and in their responses drew upon diagnosis, treatment, lifestyle, social activities and family relationships. The finished video was disseminated through YouTube. After viewing the video, members of the public were invited to complete a short survey to establish whether watching the video challenged their understanding of dementia. This paper showcases the Living Well with Dementia video, as well as exploring the ethical and practical challenges of capturing the experiences of people with dementia on video. Preliminary results from the survey are also presented, in order to explore the role of video within social media as a method to raise awareness and challenge gaps in perceptions and understanding of dementia.
Facilitated by: Dr Michelle Heward & Dr James Palfreman-Kay
Wednesday 10th December 2014 10:00-11:00
Student Hall, Talbot House, Talbot Campus
To book your place, please e-mail Organisational Development firstname.lastname@example.org
People with dementia get by with a little help from their friends, and anybody can become a Dementia Friend. It’s just about understanding a bit more about dementia and the small things you can do to help people with the condition. People with dementia want to carry on going about their daily lives and feeling included in their local community, but they sometimes need a helping hand to do so. Dementia Friends learn a little bit about what it’s like to live with dementia and turns that understanding into action. This could be helping someone find the right bus or being patient in a till queue if someone with dementia is taking longer to pay. Every action counts. Being a Dementia Friend isn’t about volunteering or fundraising (though you can do that too if you want). Just come along to this session to become a friend and get a simple introduction to Dementia, and how you can help.
Facilitated by: Dr Ahmed Romouzy Ali & Dr Michelle Heward
Tuesday 9th December 2014 10:00-11:00
EB303, Executive Business Centre, Lansdowne Campus
To book your place please visit: https://staffintranet.bournemouth.ac.uk/workingatbu/staffdevelopmentandengagement/staffengagement/disabilityhistorymonth2014/dementiafriendssession/
Last week I was invited to represent Bournemouth University Dementia Institute (BUDI) at the 9th Arts and Health South West (AHSW) Annual Conference held in Taunton. This was a great opportunity for me to talk about the Museum of Modern Art’s (MOMA’s) approach to involving people affected by dementia within their gallery space, as showcased in the MOMA Workshops held in May 2014 . I also discussed some of the work that local Dorset museums are undertaking to involve people affected by dementia, and ways to evaluate such activities.
The conference showcased a wide variety of innovative arts based projects, including: the therapeutic purposes of creative writing, doodling, and music and health from Live Music Now. The positive health impacts of arts based activities for a range of participants were highlighted in several presentations throughout the day.
To mark the successes of the Dorset Dementia-Friendly Communities (DDFC) project, a celebratory event was held in Corfe Mullen on 26th September. This event enabled those who had been part of the project, and members of the local communities, to gather to celebrate key achievements since the project began in 2012. Attendees also had the chance to contribute their ideas into planning opportunities and services across Dorset that would help to take this work forwards.
The event showcased local Dementia-Friendly initiatives, such as Dementia-Friendly Churches by Faithworks Wessex and Lizzie Kingsbury’s awareness raising activities to school children in Sherborne. Whilst I presented the findings from the evaluation of the DDFC project, recently completed by Bournemouth University Dementia Institute (BUDI). BUDI were one of ten partners involved in the DDFC project, which aimed to establish seven Dementia-Friendly Communities across Dorset in Blandford Forum, Christchurch, Dorchester, Poole, Southbourne, Weymouth and Portland, and Wimborne Minster. View the evaluation report at: http://blogs.bournemouth.ac.uk/dementia-institute/reports/
BUDI’s open meeting in 2015, which will be held on 20th May to coincide with Dementia Awareness Week, will focus on the topic of Dementia-Friendly Communities. For further details see: http://blogs.bournemouth.ac.uk/dementia-institute/events/upcoming/
On 15th October, I presented at a three-day conference at Linkoping University in Sweden on Life with Dementia 2014: Relations. There were two strands to the conference: communication and citizenship and I predominantly attended the citizenship parallel sessions as this is where I am currently focused. The conference was attended by delegates from universities in Sweden, the UK, Norway, Japan, Canada and USA, all with an interest in working and campaigning to promote the rights and inclusion of people with dementia as equal citizens or partners in interaction. In the citizenship strand, there were presentations and key notes with questions and ideas on what citizenship and rights means in the context of people with dementia, with a particular challenge of what it means for people with more severe cognitive impairment. Throughout the conference, we heard, or spoke, about interdependence, human capabilities, opportunities rather than support, inclusive research methods, co-researching, parity of participation and transformative strategies to reduce social injustice. At the end of the conference, there was a separate meeting to work on capturing the enthusiasm and commitment to ensuring people with dementia remain equal citizens, so we formed the ‘citizenship and dementia international research network’, with a view to collaborating on writing, presenting at conferences, campaigning and working on research ideas. Anyone interested in hearing more, please get in touch email@example.com