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