“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’