“The Gold Rush to Dementia Studies”—advice to a PhD candidate

Enid Cronin as Flip’s mother in the award-winning short film, Rufus Stone. © 2012 Bournemouth University and Kip Jones.

An open response to a PhD candidate’s early proposal for a project investigating the use of technology to support and improve the well being of people with dementia.

I feel that your proposal deserves my full consideration and so, to this end, I contribute a conversation as another scholar who is not directly involved in the project. Although currently considered a ‘filmmaker’ by some, my scholarship remains within the disciplines of gerontology, sociology and social psychology. I remark on your proposal with one or more of those hats on.

The proposal certainly is an interesting one and the research plan quite detailed and ambitious. This last part of that sentence is the component that concerns me somewhat.  I will try to explain why.

The project seems to be (perhaps) a continuation of earlier work that you have engaged in (not always a bad idea). The proposal begins by expressing that the psychosocial may be a better realm in which to seek some answers to the complexities of those living with “so-called dementia” (my term).  It then goes on to detail a kind of “intervention” project with many components, which attempts to replicate studies such as RCTs, etc. (with baseline, during, ‘three-months following’ indicators, etc). The plan tries to predict any or all of the stumbling blocks and pitfalls that may or may not occur along the way (the “anxiety” approach to planning; I use it myself). 

Perhaps a better way forward would be to meet with voluntary agencies, stakeholders, carers, etc., hold confabs, focus groups, etc and then design a truly collaborative plan that engages these participants at every stage. My sense from the plan as well as the language of it and your background is that you are probably more comfortable with projects that involve working with people hands-on.  Conceivably, considering a more substantially qualitative approach and jettisoning the measurement approach would be more realistic and fitting for the project. Revising the research questions to ‘How?’ and ‘Why?” queries would more substantially reflect an interest in the psychosocial and be more appropriate in terms of exploring the results of the planned intervention in some depth in regards to meaning.  Methods such as Participant Action Research, where the plan of action and action itself evolves in an iterative or recursive way by means of a collaboration of researcher with a range of participants as equal partners, might be explored.  The study proposes rural “subjects”: getting to know rural life in this particular geography may also be helpful.

My second concern is for your “student experience” itself and what a meaningful PhD progression should be. At Cambridge recently, a friend who was paying a visit to his Alma Mater said, ‘They showed me that you could learn as much about the Russian revolution by reading Doctor Zhivago as by reading a history of the revolution”. His statement stuck with me; I think that this should be the spirit of the student experience at universities generally.

The “Gold Rush to Dementia Studies” currently in vogue benefits from years of much less currently trumpeted work at its foundation. Decades of pioneering work was accomplished by such luminaries as Lawton at the Philadelphia Geriatric Centre who ‘laid the foundation within the gerontology community upon which all scientists and planners think about the unique needs of people afflicted with Alzheimer's disease’. You mention Kitwood and I would also suggest Stuart-Hamilton: ‘Dementia is not a cut and dried business. We need to stop thinking about it as if a one size fits all explanation will ever suffice, and realise that beyond the illness, a vast range of factors all impinge to make the person with dementia what they are.’ (Stuart-Hamilton  2012, “The Gift of Ageing” Psychology Today). I would add modestly, also makes the person ‘who they are’—which then potentially challenges us to move into the realm of the study of personality and life histories.

I would suggest that you take the time (and breathing space) to both confront and interrogate the status quo in the field of so-called dementia and read laterally, not only for inspiration for your own project, but also to strengthen your scholarly skills.  For example, the etymology of the term “dementia” would be an interesting one to explore. It seems to have now occluded Alzheimer’s as the “popular” term. Yet, the types of “dementia” are quite varied, from alcohol-induced to Aids-related, and from Parkinson’s to Binswanger’s disease. If “dementia” is ‘a blanket term for a set of signs and symptoms’, it would be an interesting challenge to explore how the term is being used (or misused) and what are its origins. 

I know personally that I remain uncomfortable with a term that simply by adding the suffix “-ia” may be attempting to mask one route definition of the word demented: ‘behaving in a strange, stupid or crazy way because you are upset or worried.’  What carer is prepared to pejoratively label their loved one as “demented”?[1]  How does adding the softening suffix move us any further from that kind of assumption really? As an invented term in a parallel universe, ‘Dementia’ could just as easily be a new perfume by Katie Price. 

I suggest reading Susan Sontag’s Illness as a Metaphor as a starting inspiration for a consideration of so-called dementia as a socially constructed concept assembled by language and usage. I would recommend, along with reading within the scholarly publications on dementia, that you also widen your academic explorations and influences.  Consideration of films about carers of people with so-called dementia may enrich your approach (e.g., Amour, Away from Her, Iris, etc). Also reading novels, poetry and auto-ethnographic studies written by carers may prove beneficial. Writing personal reflections about these lateral encounters will produce powerful resources for your use later in writing the thesis.

Part of post-graduate level education is accepting that ‘not knowing’ is part of the process.  A PhD is not simply another examination of what you already know, even have learned.  It is training your self to be comfortable enough with not knowing to explore, investigate and hopefully discover, thus making your contribution to knowledge as a result.

I hope that some of this is helpful.

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[1] The demise of the nomenclature,  ‘Spastic Society’, in the UK is an interesting example of language vis-à-vis use and misuse of terms. ‘In an attempt to show disability in a positive light … the society changed to its current name (Scope) on 26 March 1994’

Interfacing with older LGBT citizens Two-day Masterclass

Wed 17 April and Thurs 18 April Bournemouth University's Executive Business Centre 9:30 am to 15:30 pm

Now FULL! but you can add your name to the wait list by emailing with your name & location.

Who should attend:
Representatives from both statutory and voluntary groups are invited to Bournemouth for two days—to learn about our research, view the award-winning film, Rufus Stone, and take part in exercises drawn from the Method Deck-Methods to Diversity, a learning tool to inspire agencies, practitioners and communities to think about diversity within their ageing population. The two days will feature stimulating activities and informal discussions, the potential damage of discrimination experienced by many older gay and lesbian citizens, and what can be done about it.

What you will gain by attending:
Participants will go away from the two days of activities with new knowledge about growing older as gay or lesbian. They then will be equipped to return to their groups with training in organising their own meaningful exercises around interfacing with older gay and lesbian citizens in their organisations and reducing discrimination in their communities.

Participants will receive a complimentary copy of the Method Deck – Methods to Diversity and a DVD of the award-winning film, Rufus Stone, upon completion of the two-day training.



REGISTER AT: http://impactmasterclass.eventbrite.com/#

Costs: The cost of the Masterclass is covered by Bournemouth University, including lunches and refreshments.  Travel expenses and accommodation will not be reimbursed. 

Please insure that you will be able to attend for the full two days before registering for the event. Places are limited to 25 participants only.

Buzz around Rufus Stone continues to create academic, cinematic and community impact

“Anyone of any age and background can sit and watch this film, understand it, learn from it and emotionally connect to it”.— Dr Patricia Leavy in The Qualitative Report

The short film, Rufus Stone, (Kip Jones, Author and Executive Producer), seems to move from strength to strength. The movie was based on research as part of Research Councils UK funded research at Bournemouth University and a project of the national New Dynamics of Ageing programme.

Harry Kershaw, Martha Myers-Lowe & Tom Kane

Rufus Stone was screened as part of an ESRC Festival of Social Science event at BU in November for representatives of health and social care organisations. Participants went away from the day of activities with new knowledge about growing older as gay or lesbian in rural settings. Attendees each received a set of Method Deck cards produced by the research team to encourage their own groups in discussion and activities around these issues.

A Masterclass is in the planning stages for late April where representatives from both statutory and voluntary groups can come to Bournemouth for two days, learn about our research, view the film and take part in exercises drawn from the Method Deck. They then will be equipped to return to their groups with training in organising their own meaningful exercises around interfacing with older gay and lesbian citizens in their organisations. By partaking in the two days of activities, participants will receive copies of the Method Deck and the film. Stay tuned for details.

Freshers on HSC’s “Exploring Evidence to Guide Practice’ unit as well as Social Work students have had recent screenings as part of their learning experiences. There will be future opportunities for BU students to take advantage of this ‘home grown’ successful learning resource.

The film was screened in January at Birkbeck/University of London’s very modern Gordon Square cinema in Bloomsbury for their Doing Critical Social Research seminar series.  A lively discussion followed with what seemed a very appreciative audience.

Cambridge University welcomes Rufus to the Cambridge Arts Picturehouse cinema on the 22^nd of February at 4 p.m. as part of their Arts and Science Researcher Forum. A Q&A with Jones and Rufus Stone’s director, Josh Appignanesi, will follow the screening, BU’s Trevor Hearing will moderate.

There will be a screening of Rufus Stone in March at Talbot campus hosted by BU Media School’s Narrative Group. Following the film, Jones will discuss the use of narrative research, biography and autobiography in creating the film’s story and script.  Great chance to catch the film if you haven’t seen it already. 18 March, Kimmeridge (KG03) at 1 p.m.

Community screenings at local cinemas in Poole and Wareham are set for the BU Festival of Learning on June 5^th at the Lighthouse and June 12^th at the Rex. Both start at 1 p.m. with refreshments and conversation to follow. We are particularly hoping to draw crowds of a range of ages and backgrounds from local communities.

William Gaunt, Lin Blakley & Niall Buggy

For information, registration and/or ticket details for all future screenings, check the sidebar on Rufus Stone the movie BU microsite.

Buzz around the film has also hit the net. The Sociological Imagination features the trailer for the film on its pages and discusses ‘Turning Research into Film’. The Qualitative Report frequently features updates about Rufus Stone in its Weekly Report and recently ran a review of the film by author and educator, Patricia Leavy.

London School of Economics and Political Science (LSE) “Impact of Social Science” web pages recently interviewed Kip Jones about Rufus Stone. Topics covered include: “How did Rufus Stone come about?” “What is the relationship between the research and the film?” and “What advice to you have for social scientists interested in using tools from the arts?”
5 Minutes with Kip Jones: “we engage in the creative process and open new doors for communication”.

As well as winning two awards at the prestigious Rhode Island International Film Festival last summer, the film has also recently featured in the Torin (Italy) Film Festival and the UK Jewish Film Festival in London.

An academic article by HSC’s Kip Jones, Lee-Ann Fenge, Rosie Read and Marilyn Cash goes live in Forum:Qualitative Social Research, an on-line journal, shortly. The paper outlines the research behind the film, then presents in-depth life stories of four of the research participants.

Jones has also recently published , “Connecting Research with Communities through Performative Social Science”, which makes a case for the potential of arts-based social science to reach audiences and engage communities.

YOU can now watch the film online and for FREE at: https://vimeo.com/109360805

 

Rufus Stone selected for Torin Film Festival

Rufus Stone has been selected for this year’s Torin Film Festival, 23 Nov-1Dec in Torino, Italy. Held every November, it is the second largest film festival in Italy, following the Venice Film Festival.
The 30-minute film is the result of three years of in-depth research into ageing and sexuality in rural Britain at Bournemouth University. The project, led by Bournemouth University’s Dr Kip Jones, uses the film as its main output.
Rufus Stone was directed by Josh Appignanesi (The Infidel) and produced by Parkville Pictures, London. The film stars well-known stage and television actor, William Gaunt in the title role. Jones was author of the story and acted in the capacity of Executive Producer for the film.
The film will be shown three times during the festival, which opens with a screening of Dustin Hoffman’s directorial début, Quartet. The festival will close with Ginger & Rosa, a 1960s coming-of-age story from U.K. director Sally Potter.
Rufus Stone will be screened in the Festa Mobile sidebar, made up of mostly European and Italian premiers, including Anna Karenina, Joe Wright’s adaptation of the Leo Tolstoy classic that stars Keira Knightley and Jude Law.
Rufus Stone was recently featured as part of the ESRC Festival of Social Science at Bournemouth University and will be shown locally as part of BU’s Festival of Learning next June. Future screenings are also planned for Birbeck, Cambridge and Oxford Universities.
More information on the research project and the film
Torin Film Festival 

 Watch the film here:  https://vimeo.com/109360805

Case is made for fusion of the Arts and Social Sciences

In an article in The Qualitative Report (Vol 17: 18, 1-8) published electronically recently, I make a case for the potential of arts-based social science to reach audiences and engage communities 

Entitled, “Connecting Research with Communities through Performative Social Science” (PSS), the paper contextualises both the use of the Arts in Social Science, as well as the utility of Social Science in the Arts and Humanities. PSS is conceived of as a fusion of the Arts and Social Sciences, creating a new paradigm where tools from the Arts and Humanities are explored for their utility in enriching the ways in which we investigate Social Science subjects and involve communities in our research efforts and diffusion of our collaborative endeavours. Performative Social Science is redefined in terms of a synthesis that can break down old boundaries, open up channels of communication and empower communities through engagement.

The article harks back the beginnings of PSS by recalling the influential AHRC funded series of workshops, “Social Science in Search of its Muse” held at BU throughout 2006-07, reported in a short video. This was followed by a Special Issue on Performative Social Science for the online, qualitative journal, Forum: Qualitative Social Research (Jones et al., May, 2008), providing a wide range of examples and manifestations of PSS, with contributions from various disciplines/subject areas, and realized through a wide variety of approaches to research practice.

Since these early efforts in PSS, the impact of these explorations has been measurable, including several completed PhDs utilizing principles of PSS, many journal articles, films and conference presentations nationally and internationally and further funding by Research Councils UK of research based in Performative Social Science methods.

I then turn to examples from my own work to illustrate what happens when Art talks to Social Science and Social Science responds to Art. The benefits of such interaction and interdisciplinarity are outlined in relation to a recently completed project using multi-methods, which resulted in the production and current dissemination of the professional short film, Rufus Stone.

I conclude that “Performative Social Science provides the overarching intellectual prowess, strategies and methodological and theoretical bases to engage and unite scholars across disciplines and, in turn, connect researchers’ endeavours with communities and stakeholders. Performative Social Science or a fusion of the arts and sciences are central to both community engagement and as catalysts for change”.

Connecting Research with Communities through Performative Social Science

Rufus Stone reviewed for The Qualitative Report

 Patricia Leavy, well-known author and innovator, has reviewed Rufus Stone the movie for the on-line qualitative journal, The Qualitative Report.  Entitled, "A Review of Rufus Stone: The Promise of Arts-Based Research" the review is available for download.

Patricia is an independent Author, Researcher and Commentator who lives in Kennebunk, Maine USA. Among her 11 books she is the author of Method Meets Art: Arts-Based Research Practice (Guilford Press), Essentials of Transdisciplinary Research: Using Problem-Centered Methodologies (Left Coast Press) and the research-informed novel Low-Fat Love (Sense Publishers). For more info please visit her website.

Just some of her responses to Rufus Stone the movie:

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• Rufus Stone is both an incredible short film and it embodies all that is best about arts-based research.
• I am absolutely blown over by how good Rufus Stone is.
• The film is not only a glaring look at how homophobia and intolerance can shape people’s experiences, but it is also a film very much about looking at who we are, how we became who we are, and how we allow our lives to unfold.
• Anyone of any age and background can sit and watch this film, understand it, learn from it and emotionally connect to it.
• If research is intended to teach, illuminate, shed light on topics of import and challenge our assumptions, Rufus Stone is an exemplary piece of research.

"This film was as good as most Oscar-nominated shorts, and vastly superior to many.  In my opinion, it was just about as good as a short film gets".

Watch the film here:  https://vimeo.com/109360805

Rufus Stone double win at Rhode Island Film Fest!

Rufus Stone  has just scooped two awards at the prestigious Rhode Island International Film Festival in the USA, the only short to win in two categories at the festival:  the Grand prize in the Alternative Spirit category and the Youth Jury Award for best GLBT film at the festival.

The Rhode Island International Film Festival consisted of six days and nights of screenings, meetings and greetings featured more than 200 films selected from more than 4,000 entrants.

The Youth Jury is a programme that introduces youth to the world of independent film. The youth attend multiple screenings during the Festival, Q&A’s, and festival events. Their goal is to deliberate, and choose a Best Feature, Best Documentary, and Best Short to receive the Youth Jury award.

Just a few reactions to Rufus Stone from audience members at earlier screeings:

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“Critically the authenticity of the film shone through – the characters were real and genuine”.

•   “emotionally gripping”
•   “technically innovative and striking”
•   “a brilliant way to portray research"
•   "beautiful and very intense”
•   “a quite remarkable film”
•   “a brilliant film, beautifully crafted and full of empathy”

“Rarely does one get the chance of seeing a love affair between two men portrayed on screen credibly and realistically, not to say very movingly”.

“A kind of ‘ To Kill a Mocking Bird’ type film that makes you really think about your morals”.

Bournemouth University's Kip Jones (The Media School & HSC) said, "Winning at prestigious film festivals such as RIIFF is important in getting the film seen by a wide audience. This is the kind of impact that we imagined from the outset of the research project itself". 

"I am particularly pleased for our director, Josh Appignanesi, who took on board the concept of fusion of research and a professional film and visually brought it to life through Rufus Stone."

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"Gay and Pleasant Land? -a study about positioning, ageing and gay life in rural South West England and Wales" was  funded by Research Councils UK.

The Rufus Stone microsite gives more information about the film, and the research that inspired it.

Watch the film here:  https://vimeo.com/109360805

Film selected for Rhode Island Film Festival

Rufus Stone has been selected for acceptance by the judges for exhibition during this year's FLICKERS: Rhode Island International Film Festival (RIIFF), August 7-12, 2012. RIIFF is the largest public film festival in New England and an Academy of Motion Pictures Arts & Sciences qualifying event.
In 2002, Flickers was notified by the Academy of Motion Picture Arts and Sciences (AMPAS) that it had elected to recognize the Rhode Island International Film Festival as a qualifying festival for the Short Films category for the Annual Academy Awards. With more than 7,000 film festivals worldwide, only 65 have this recognition.
"One of the top 10 Short Film Festivals and Top 10 International Film Festivals in the United States."

- Chris Gore, author of The Ultimate Film Festival Survival Guide, 2nd edition

Website: http://www.film-festival.org/index07A.htm
Watch the trailer for Rufus Stone  the movie here.

Rufus Stone to be screened at ESRC Festival of Social Science

Congratulations to Bournemouth University’s Dr Kip Jones who has been awarded funding from the UK's Economic and Social Research Council (ESRC) to run a public engagement event as part of the ESRC’s Festival of Social Science later this year.

The event will be a multi-activity format including a screening of the film ‘Rufus Stone’ and launch of the method deck ‘Methods to Diversity’ –a community organising tool, led by Dr Lee-Ann Fenge; day to include small group discussions, distribution and hands-on experience with the method deck, reports from Research Projects (BU & Equality SW); participation of Research Advisory Group and Intercom Trust.

The ESRC Festival of Social Science runs from 3-10 November, 2012.  Further details to follow.

Watch the trailer for Rufus Stone here. 
 Watch the film here:  https://vimeo.com/109360805

Ultimate trailer for Rufus Stone released!

The joint efforts of Trevor Hearing (BU Media School), Ross Hillard (composer) and Kip Jones (Media School & HSC) have produced a short trailer for Rufus Stone the movie that captures both the story of the film as well as the beauty of its cinematography in two and a half minutes.

Play full screen, turn up the sound and enjoy!

Rufus Stone is a film about love, sexual awakening and treachery, set in the bucolic countryside of south west England, and viewed through the lens of growing older. It is based on knowledge gathered as part of the research project “Gay and Pleasant Land? – a study about positioning, ageing and gay life in rural South West England and Wales.”

Our thanks to Pam Postrel, mOcean Entertainment in LA, for her advice on making this trailer. mOcean‘s most recent success was producing the trailer for the Hollywood block-buster, ‘The Avengers’.

Watch for future screenings of the film at conferences and film festivals over the year.  Through this process, we hope to develop resources to disseminate the film more widely.  Always happy to talk with any parties who might offer possibilities for exhibition and/or distribution of the film! Please contact Kip Jones, Executive Producer, at kipworld@gmail.com

 Watch the film here:  https://vimeo.com/109360805