Blog – Looking into inequalities in dementia care pathways

In October last year, the NIHR Dementia Researcher published my first blog post, shortly after I started my PhD at the University of Liverpool.  I am now over six months into my PhD investigating the socio-economic and geographic variation in care pathways and the resulting health and economic outcomes for older populations and coming towards submitting a paper for (hopeful) publication – a systematic review!

I read systematic reviews before, but probably didn’t think I would be conducting one at the start of my PhD.  The process was new to me and I am lucky to have such a supportive supervisory team (including fellow NIHR Dementia Researcher blogger Clarissa Giebel!) and fellow PhD researchers at the University of Liverpool.  I have been back to that well several times since.

There is no consensus on how systematic reviews should be done, but maintaining rigour and adhering to trusted methods was essential – we adhered to the PRISMA checklist and guidance.

Initially, we were to decide what we were to look at and finding a gap in the literature – defining our research question.  As the first strand of my PhD research will be a quantitative analysis of routine data investigating inequalities in dementia care pathways, it was important to know how researchers have used routine and cohort datasets to investigate inequalities in dementia care and outcomes.

Evidence highlights the association between deprivation and general health, dementia prevalence and quality of life for people with dementia.  However, there is a dearth of evidence analysing routine data – in essence, data that is captured as people come into contact with services – to understand variation in the type, amount and quality of care for people with dementia.

Our searches of electronic databases and of the grey literature returned hundreds of records.  In two stages – firstly, reading the title and abstract, and then secondly, reading the papers in full to remove those which did not meet our inclusion criteria – we had managed to narrow this down fewer than fifty papers to include in our final review!

On achieving a final list of papers (and it is an achievement, believe me), it is important to not only collate the evidence, but also assess their quality.  We need to know the strength of the available evidence, and applying a quality rating system is essential; we adopted one employed by a previous systematic review by Mukadam et al. (2011), which I had read as I was working on my review.

As you read this, I am collating findings and, very soon, intend to submit my work to journal(s) for their consideration!  Narrowing the gap in inequalities has always been important to me and a primary part of my research career.  I hope this review will go some way to highlighting the importance of further work to improve access to, and quality of, care for people with dementia.

At points it was difficult to see the wood for the trees, and I am sure I am not the first person to have felt slightly overwhelmed in conducting my first systematic review.  However, as I read the full-text of the final papers and synthesised the results, everything makes more sense, and I feel on the path to attaining what I set out on several months ago!

I look forward to updating you on the findings of our systematic review and the continued progress of my PhD!

Author

James Watson

James Watson is a first year PhD (2019) student at the University of Liverpool, exploring socio-economic and geographic variation in care pathways and their resulting health and economic outcomes for older populations. With a back ground in public health and local authority he previously worked as the primary analyst for older people’s health and dementia. He completed the Masters in Public Health at The University of Liverpool, with a dissertation exploring informal carers’ views and perceptions of providing end of life care to a family member.

Follow @Jmswats