Research into neurodegenerative
diseases in primary care is as underdeveloped as primary care services for
patients with these diseases. Because they are either relatively uncommon (like
some dementia and Parkinson’s disease) or just rare (for example MND and
Huntington’s disease) primary care practitioners do not easily develop
experience in their management. Primary care researchers also
tend to focus on very common problems (the management of respiratory tract
infections), or at least those that are relatively common but with a high
impact (like heart disease, diabetes and hypertension). DeNDRoN’s Primary Care
Clinical Studies Group therefore starts from a low baseline of research
activity, but at least this means that any progress is immediately obvious. The Primary Care CSG has met
twice, first to consider its terms of reference and to initiate debate about
research priorities in neurodegenerative diseases, and subsequently to develop
research ideas further. Its founder members include three general practitioners,
two clinical psychologists, a health services researcher, an academic social
worker, a neurologist and an old age psychiatrist. All have research and
development expertise, as well as clinical/service experience in
neurodegenerative disorders. We are co-opting an epidemiologist and an
additional general practitioner to extend the range of expertise available to
the CSG. We have had user involvement from the outset and are expecting to
increase this. Research priorities:
Clinical predictors of conversion
from MCI to dementia syndrome
Secondary prevention of
progression from MCI to dementia syndrome
Improving early recognition in
primary care (dementias, Parkinson’s disease)
Characterising pathways into
services (for diagnosis, treatments and support)
Secondary prevention of
disablement in diagnosed dementia syndromes
Effects of co-morbidities on
dementia progression
Effects of case management of
comorbidities on dementia progression
‘Best buy’ models of
generalism/specialism in neurodegenerative disorders
These themes were matched against
research methodologies like: prospective longitudinal studies in unselected
populations; development, feasibility testing and trialling of interventions,
particularly educational ones; retrospective database analysis; and Fourth
generation/Realist approaches to service evaluation. The debate in the CSG is
now about refining and prioritising themes, and focusing on specific research
questions that could be the basis of future research proposals, or that could inform
calls for research from major funders. A gratifying number of funded
research projects relevant to the CSG are now coming on stream, including two
NIHR five year programme grants led by CSG members, and a smaller study funded
by the Alzheimer’s Society on developing psychosocial interventions for
dementia in general practice. The Primary Care CSG has two further objectives:
to develop its ideas about primary care research in Parkinson’s disease, and to
explore the overlap between its current research agenda and that of the
Dementia CSG.