Date: Weds 17th May
Time: 14:00 – 17:00
Venue: The University of Salford
The Salford Institute for Dementia at the University of Salford will be proudly hosting the Alzheimer’s Research UK North West Public Engagement Event on the afternoon of the 17th May 2017 which falls within National Dementia Awareness Week. This event will be held in collaboration with The University of Manchester, Manchester Metropolitan University and The University of Liverpool.
Through interaction with academic researchers and local dementia service/information providers the aim of this event is to help the public understand the bio-psych-social nature of dementia and local advances in dementia research, whilst learning more about local dementia support networks and initiatives.
This event aims to work collaboratively with people directly impacted by dementia and provide an opportunity to celebrate the successes of local dementia associated projects. This interactive afternoon will combine traditional poster presentations, lab tours, information points, performances and family friendly activities which will take place at the Peel Park Campus at the University of Salford. We will also be celebrating the launch of the ‘Hub’ space and the new dementia friendly garden at the Allerton Building, with opportunities for visitors to view the internal space, meet the team, talk to our dementia associates and participate in activities in our new dementia friendly garden.
Please register your interest to attend this free event here! https://www.eventbrite.com/e/salford-institute-for-dementia-public-engagement-event-tickets-31678160230
If you would like to volunteer on the day (i.e. to help with set up, chaperoning etc) then please get in touch with Dr Gemma Lace-Costigan (firstname.lastname@example.org or 01612955111).
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Sam Calvert, who volunteered for the Salford Institute for Dementia, passed away at home on January 15th this year. Sam was a member of the Dementia Associates group with the Salford Institute for Dementia, husband and carer for Lesley, father to Jane and Andrew, and loved Grandfather of four.
Sam had been involved with the Institute from its early conception in 2014. Initially to support his wife Lesley, a retired Nurse living with young onset dementia, to educate students and staff about her experience of living with dementia. Sam gradually become more confident in this new environment which gave him a stronger voice as a carer and also as a guiding light to many people living with dementia in Salford.
Sam and Lesley became involved in the planning of the Good-Life festival; a festival created by a cooperative team of people living with dementia and staff from the Institute that showcased that people can and do live well with dementia. Sam had a great way with words which meant he was able to talk about dementia and the work of the institute – in a way that would connect with everyone. One of the prominent images of the festival is a smiling, happy Sam wearing a yellow dementia-friendly hoodie in order to guide people to the event location.
Beth Luxmoore who was on the planning team with Sam and Lesley says, “Sam’s kindness showed through in his thoughtfulness; the way that he always remembered how I liked my tea and the way he paid close attention to the little things that were most important to people.”
Sam and Lesley were both passionate about improving the lives of people living with and affected by dementia and were keen advocates, advisors and supporters of dementia research at the University of Salford’s Institute for Dementia. He was an Advisor on a three year action research study on how people can live well with Young Onset Dementia, as well as being part of focus groups looking at the planning of the new Institute Hub and participant on many research studies.
Andy Walker worked closely with Sam in his role as a development worker at the Institute. After Sam’s diagnosis Andy said that he feels privileged to have been able to spend time with Sam, getting to know the generosity of the man behind the smile. He says that examples of his humanity and kindness are too many to mention but all Sam’s thoughts were focussed on Lesley, his family and others to continue to lead meaningful lives after his death. He remembers one conversation with Sam that he believes epitomises the loss to the world of a true giant; “Who’s going to take X swimming? Lesley and I used to pick him up on the way to the baths. I’d make sure he got changed and dressed OK because he can get a little muddled. Tell people to use the third cubicle from the end on the left hand side because the door stays shut without being locked, so you can help if necessary and he still has his dignity.”
Sam was also determined that services needed to hear the experiences and opinions of people affected by dementia so became a member of the Dementia Champions Group that helps shape service delivery across Salford. He was also involved in the making of films with Lesley for the Alzheimer’s Society promoting dementia services across Salford, Greater Manchester and beyond.
Sam’s kindness and friendship in the Salford Dementia Community will be missed greatly by many at the various groups and activities they attended together including the Dementia Associates meetings, Open Doors group, Mount Chapel Champions, various dementia cafes and the Dementia-Swimming session hosted by Salford Community Leisure at Worsley Leisure Centre.
Sam was born on 11th February 1948 in Salford and died at home surrounded by his family on 11th January 2017 from Pancreatic Cancer. The family have raised over £650 for Pancreatic Cancer Research and £600 for Dementia Services in Salford.
We all feel honoured and lucky to have known Sam.
Andy Walker – Development WorkerLeave a comment
The Salford Institute for Dementia at Salford University ran a Community Christmas Celebration on the 21st December 2016 at Humphrey Booth Resource Centre in Swinton. This was the third Christmas Event that the Institute has organised with funding from Humphrey Booth charities with the aim to help reduce isolation through Salford, especially at Christmas time . Fifty older people attended the Christmas party which included a choir, live music and a hot Christmas Dinner. One gentleman who attended the event with his wife, who has dementia, said about the day, “these events lift our mood and make us feel that we are not alone. “
The event could not have happened without volunteers from a variety of organisations. Staff and students from the university and staff from Salford Council also helped out on the day and were involved in a collection within their staff force and provided many Christmas gifts for the people who attended. This also involved the Youth Offending Team where the young people they work with wrapped up the presents, and a few arrived on the day to help distribute the gifts as part of their community service.
There were also kind donations from local businesses. One such business Mainline Taxi Company based in Salford were able to provide several drivers who offered their services free of charge for the event. Nick Rose, a manager at Mainline who helped co-ordinate this says, “We are a local firm who want to help people living in Salford. One of the driver’s mum has dementia so it was something close to his heart that he really wanted to help with. Several years ago we were mentioned in parliament by Hazel Blears as the first taxi service in the country to become dementia-friendly. This is something we need to push forward with and for 2017 we want to receive more training and support from the Dementia Action Alliance and the Institute for Dementia to continue to support people in Salford living with dementia to get out and about.”
Dr Tracy Collins from the Salford Institute for Dementia who conducts research into communities and loneliness with older people says , “‘Christmas can be a particularly difficult time of year for some older people, the Christmas events provide opportunities for older people who would otherwise be alone to socialise, make new friends and feel part of their community’’
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At the Salford Institute for Dementia we have developed an important partnership with people who are living with dementia and carers of people who have dementia, our ‘Dementia Associates’. This partnership of Dementia Associates and the staff of the Salford Institute for Dementia means that people with dementia have the opportunity to be included in their local communities by contributing to research, engagement and education activities at their local university. Academics and researchers at the Salford Institute for Dementia have the opportunity of being informed throughout any dementia related project by a team of vibrant, motivated colleagues. The impact of the Dementia Associates work extends beyond their local community to have a national and international impact.
The approach taken to the involvement of the Dementia Associates is one that optimises their use of their skills, knowledge, experience, passions and aspirations. The Dementia Associates have a designated support colleague at the Salford Institute for Dementia, Claire Marrett. Claire’s role is to provide a one person point of contact for all of their communication, meetings and activities.
This year the Dementia Associates held their own conference, ‘The Good Life Festival’. The conference planning committee of Dementia Associates was supported by Claire Marrett (Salford Institute for Dementia) and Beth Luxmoore (Alzheimer’s Society). This event was designed by people living with dementia and their carers for people living with dementia and their carers- to present approaches that they had developed to ensure that they lived their lives well. Sessions included dementia friendly swimming, dementia friendly friendship groups and interactive sessions on outdoor activites and dementia friendly dancing.
One of the activities was an opportunity to visit the Salford art gallery and museum and have a personalised tour of a new exhibition. The Dementia Associates presented their own journey of living with dementia in small workshops. The Illustrator Tony Husband presented pictures from his book “Take care Son” which people attending the conference found moving and humorous.
An account of the conference from a ‘mystery shopper’ a festival reviewer, who initially felt that the words ‘dementia’, ‘good life’ and ‘festival’ should not be included in the same sentence demonstrated the impact of such an event. His understanding of dementia after attending the Good Life Festival changed to become ‘‘A dementia diagnosis isn’t the end, in fact it’s only the beginning of a new journey in life. The festival helped me see that and it helped people living with dementia celebrate life, and informed them of new ways to celebrate life through art, music, nature, dancing, singing, sport, friendship groups and holidays and informed people of local initiatives and groups they could get involved with.”
The Dementia Associates have also contributed to the planning, implementation and evaluation of:
Positive about Dementia (POSaDEM) – a European Dementia Masters level programme. This included attendance at meetings in Maastricht and Brussels
Dementia–friendly flooring principles with academics from the School of the Built Environment and an international flooring company
Advisory group for a research project focusing on experiences living with young-onset dementia
Human Rights Conference hosted by the Salford Institute for Dementia
Dementia-friendly Housing project
Creation of games for people with dementia and carers
Looking at new ways of using technology whilst living at home with dementia
Creation of a new hub for the Institute for Dementia.
The experience of being a Dementia Associate is exemplified here by words from some of the Dementia Associates:
“Being involved with the Institute has given me a purpose and a sense of belonging.”
“I’ve never been involved in anything like this before. Never planned an event and I’m really proud to think that I helped achieve that.”
“For the time I was away with the POSaDEM project and staff from the Institute, I felt alive.”
“I know he really enjoys being part of the Institute. Every since he had to give up his job, it’s been tough. But being involved here has provided him with a structure and a way of helping others and still being involved within a professional umbrella.”
The partnership between the Dementia Associates and staff of the Salford Institute for Dementia is one that represents how the sharing of knowledge and friendship can contribute to dementia friendly solutions to the challenges that face society.Leave a comment
In June Dr Joy Watson and I delivered a dementia awareness session. The session was called an ‘Evening with Joy’ and was yet another example of the value of collaboration between the staff at the Salford Institute for Dementia and our Dementia Associates. Whilst I could have delivered the session by myself and inform those attending the session, I knew that Joy’s involvement would transform their understanding and perspectives. By the end of hour together the people attending the session ‘An evening with Joy’ knew why Joy had been awarded an Honorary Doctorate by the University of Salford for her dementia activism. I had been honoured to be the person who delivered the oration for her award:
Chancellor, Vice-Chancellor, Distinguished guests, Salford Graduates, Ladies and Gentlemen, it gives me great pleasure to introduce to you today Joy Watson, dementia activist and Dementia Associate of this University.
Up until a few years ago Joy would have described herself as an ordinary woman; a wife and mother.
As a young woman Joy undertook her cadet nurse training and then worked as a physiotherapy assistant and a health care assistant.
So it is appropriate that she receives her Honorary Doctorate at this Health Sciences Graduation ceremony.
Recent events in Joy’s life and the way that she has responded to them means she is now best described as a phoenix; a purple haired phoenix who has risen from the ashes of being diagnosed with young onset dementia at the age of 55.
In the last few years Joy has developed the ‘art of finding’, that art of finding a new route in life after her diagnosis. A route that means that she is now recognised nationally as a powerful dementia activist.
Joy uses her voice as a dementia activist to explain how this generation and future generations can become more dementia aware and more dementia friendly. Joy describes this work as her passion. A passion that gives her a reason to get up in the morning and that gives her a positive focus rather than a focus on the negative aspects of living with dementia.
Joy’s voice is louder than that of Alzheimer’s disease.
Joy started her campaign to make a positive difference to the experience of people living with dementia- locally in the first instance- by converting nearly every shop in Eccles to being dementia aware and dementia friendly.
I need to add here that Joy has a powerful ally in her work, her husband Tony. In Joy’s own words ‘quite where I would be with his love and care I do not know.’
Joy Watson has been a dementia activist nationally as:
- a Dementia Friendly Communities advisor for the Prime Minister’s Challenge on Dementia
- a guest on CNN
- a guest on Panorama
- and both the ITV and BBC sofas
Joy has also received a national award from the Alzheimer’s Society for her work as a dementia activist.
We are fortunate at the University of Salford to have Joy Watson as one of our Dementia Associates, a team of people with dementia and carers of people who live with dementia; who contribute to our research, enterprise and education work at the University.
As a Dementia Associate of the University Joy:
- teaches on our M.Sc. Dementia: Care and the Enabling Environment
- is a research advisor on a Booths Charities funded research project in to the needs of people with young onset dementia
- has contributed to an European Union funded dementia education project
- helped to develop successful conference hosted by the University called ‘The Good Life Festival’ , which was exclusively for people living with dementia
- and regularly advises the external board of the Salford Institute for Dementia
During this time Joy’s appearance has become more striking, with her increasingly vibrant purple hair. Joy attributes her increased confidence to feeling a valued part of society, something that she feels she had lost the day that she was given her diagnosis.
Joy is also a pioneer and is currently training a new kind of assistance dog. Demi is a labradoodle who has an important role to undertake, supporting Joy and leading the way for the training of future dementia assistance dogs.
It is a privilege for us to welcome Joy Watson here today; for the way in which she has succeeded in rising from the ashes of an unwelcome diagnosis of dementia to becoming a powerful, dementia activist making sure that her voice helps society become dementia aware and more dementia friendly.
Chancellor. I present for the Degree of Doctor of the University, honoris causa, Joy Watson
Senior Lecturer in Nursing
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The University of Salford has allocated a new space to be developed as the ‘home’ of the Salford Institute of Dementia. The assigned space is in the Allerton Building Block A. This gave an excellent opportunity to all who are involved with the Salford Institute of Dementia to get engaged to develop the space that will not only showcase the work that institute has been doing and it’s the future aspirations. But above all will form a key place that could offer guidance and information to the community and to the people with dementia and their families. Therefore to ensure that the users concerns and needs are understood and considered and the final outcome reflects the users’ aspirations. It was decided to hold an event where all the people e.g. the researches, staff, architect, people with dementia their families and friends could come together and discuss the options to develop the allocated space for the new Salford Institute of Dementia ‘hub’.
The event was organised by Dr Monika Sharma, Postdoctoral researcher, Natalie Yates-Bolton, Senior Lecturer Nursing and Claire Louise Marrett, engagement officer. The event was held on the Monday, 27th June 2016 from 10:00 am. to 12:00. Further the event was organised in Allerton block A i.e. the allocated space so that the users understand the space and can easily correlate with the conceptual design prepared by the architect.
The event was well received; a total number of 19 people and a dementia friendly dog Demi attended the event. It was initiated with the walk around the assigned space to be developed as the home for the new dementia hub, followed by discussion on the conceptual designs. This event certainly provided the opportunity for the users to raise their concerns and to further discuss them with the wider group. This event facilitated to bridge the gap between the architect and the users, thus giving the designer better understanding of the users’ needs.Leave a comment
Reminiscence groups are a popular intervention and activity for people with dementia. Most research that is available focuses on the effectiveness of reminiscence for the person with dementia. A recent research study, the REMCARE trial (Woods et al 2016) aimed to investigate it slightly differently and conducted the ‘largest rigorous trial of any reminiscence intervention for people with dementia in the world literature and the first economic evaluation’ (p16) where the person with dementia and their family carer was jointly involved.
Dr Elizabeth Collier was invited by André Tomlin to write a blog for Mental Elf on the REMCARE study. The blog explains the study and provides commentary on the strengths, limitations and utility. The blog can be seen at http://www.nationalelfservice.net/mental-health/dementia/reminiscence-groups-for-people-with-dementia-and-their-family-carers-remcare-trial/
The Fondation Mederic Alzheimer is one of the leading organisations in France campaigning for those living with dementia; commissioning research and evaluation around innovative approaches to dementia practice; disseminating good practice and research innovations; and organising various events such as this event – the 3rd French conference on ‘Social Sciences for Dementia’ organised by Dr Fabrice Gzil, the programme manager for social sciences at the Fondation. I was one of 6 international speakers invited to present on one area of work, Rural Dementia Care, that the Fondation has identified as key aspects of dementia in the future. The event was attended by around 250 French participants in an amazing 13th Century building in the Latin Quarter. The format was different to what I am used to – presenting in English, yes, but with translated handouts slides (not available to view during the session) with the resulting discussion in French with a translator trying to paraphrase a very rapid and engaged discussion with French participants. The other international presenters, Fiona Kelly, Dawn Brooker, Kate Irving and Julian Hughes were fellow native English speakers, our Dutch and German colleagues had a three stage linguistic process to navigate to follow the presentations in English and the discussions in French! A very interesting experience we all agreed.
Professor Anthea Innes – Coles-Medlock Director at the Salford Institute for Dementia.
On the 22nd June, Dr Mark Wilding and I presented interim findings from the Salford BME Dementia Study at an event organised by Salford CVS (the project funders).
This study is timely since there is limited knowledge of the needs of people with dementia and care-givers from BME communities, and, due to migration patterns from the 1950s and 1960s, the UK – and Salford – is home to an ageing BME population.
The aim of the study is to increase awareness of dementia and dementia services in Salford for people from BME communities. Our findings so far –based on one to one interviews with service providers and community members – reflect much of what the (rather limited) literature suggests: service providers report challenges in including BME people in decisions about service provision in general, and people from BME communities seem reluctant to come forward to dementia services in particular; there seem to be very low levels of awareness of dementia among Salford’s BME population, and there is often a stigma surrounding the disease. On Saturday 16th July we will be holding focus groups with refugees from a range of different countries and also running a dementia awareness session at Pendleton library. We are grateful to Visible Outcomes for facilitating this important introduction. The study will finish in September and we will produce a final report with recommendations to increase service take-up in November.
Dr Anya Ahmed (Senior Lecturer in Social Policy), School of Nursing, Midwifery, Social Work and Social Sciences
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I began my career as a system developer in 2007. I have a strong belief in co-design, as a method of creating responsive and engaging environments based on user preferences. In my view, public engagement is vital to research contributing to constructive change and improvement of services.
My passion for research started with the undergraduate dissertation project on web accessibility, during which I discovered the power of social media in engaging the public in research and shaping a more inclusive future. Working closely with Paula Ormandy, Professor in long-term conditions research, inspired me to apply social media and digital strategies to healthcare and look at the future of health information provision, engaging patients and the public in the process of sharing and consuming information.
Throughout my research, I listened to various stories, especially from patients, either on the lack on feedback regarding their involvement in research or on the impenetrable language of research papers (e.g. http://gmkin.org.uk/patients-can-change-the-future-of-research/#more-4002). It became clear that we can do more, not just to improve the way research is presented, but how it is designed, implemented and disseminated to maximise impact.
1. Co-creating to foster ownership
My passion for user engagement is embedded within a personal motivation and wider need to improve how we implement online interventions. I strongly believe in involving the public as co-designers of research projects from inception to dissemination in order to empower them to make positive behaviour change.
Here is the example of how I used social media to involve the public in research, which influenced the development of guidance on patient involvement using social media http://www.invo.org.uk/wp-content/uploads/2014/11/9982-Social-Media-Guide-WEB.pdf (work in collaboration with the National Institute for Health Research INVOLVE).
2. Communicating information in different formats
The more we share ideas and disseminate findings, the wider impact we achieve. The rise of digital and social media presents us (researchers) with a variety of communication channels that can be used to engage in conversations with wider audiences and disseminate information. To name a few:
- Twitter remains a very powerful platform to attract stakeholders, network and increase the profile of research projects. For example, I used Twitter in 2008 to recruit users with disabilities to test e-commerce websites and their compliance with accessibility standards and to research disabled people’s needs and gather solutions for overcoming online barriers.
- Facebook is widely used to create support groups and disseminations of information but could be resource intensive. I used Facebook to create a closed group for renal patients in Greater Manchester. It allows users to talk in confidentiality, access support and build social capital.
- Instagram, an online mobile photo-sharing and video-sharing network, is growing faster in popularity. It enables disseminating information in the form of photos, graphics, etc. (See example: Salomon, D. (2013). Moving on from Facebook Using Instagram to connect with undergraduates and engage in teaching and learning. College & Research Libraries News, 74(8), 408-412 )
- WordPress enable us to co-create detailed and user-tailored snippets of information in the form of blogs or more structured approaches like question and answers. For example, I used WordPress (open source software) to build websites such as GMKIN. At University level the blogs and hubs are powered by WordPress.
- Podcasts are an alternative to text/blogs. Using dynamic and interactive content can be engaging and easy to follow. A good example is Making Research Count Youtube channel.
- Snapchat “Life’s more fun when you live in the moment” (Snapchat, online live stories) – Snapchat allows users to make friends and share information that can be viewed for a limited period of time only. The auto-deletion and in friend type enable users to engage in more intimate and self-disclosing interactions. See more information on the case of Snapchat and disappearing data.
- Infographics (e.g. Piktochart) enable visual representations of information and complex data in a simple way using graphic. A good example here.
Crucial to all the platforms is that a two-way communication process is followed. Allowing users to comment, share and engage in conversations supports them in developing new relationships or strengthens existing ones.
3. Crystal clear communication
In my view, impact is not just doing the right research but disseminating the research widely using plain language. A client introduced the Crystal Mark to me in my web development days, believing that the final product should not only follow the W3C validation service (an accreditation for websites) but be accredited by Crystal Mark. I saluted his initiative given my own situation; English was not my native language and most pieces of information (mostly research papers) read as yet another foreign language.
Lastly, I recommend having a strategy which is embedded into your financial plans. A website without visitors is a ghost town as is a social media presence with no interaction. Use social media to build networks; engage in conversations and share information to maximise research impact.
Cristina Vasilica, @CristinaVas
Research Fellow in Digital & Social Media in Healthcare | Impact Champion of Salford Institute for Dementia
Interests: Social & Digital Media Impact / Engagement / Evaluation
School of Nursing, Midwifery, Social Work & Social Sciences
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