Dementia research: from ugly sister to Cinderella …what a difference a decade makes!

Over twenty years ago, when I was training to be a GP, I made my first possible diagnosis of dementia in one of my patients. The frail lady in her early 80s however lived almost 40 miles from the nearest memory clinic and a formal dementia diagnosis had to be made by a specialist physician. On discussing the case with my GP trainer and whether we referred her, I still remember his words "Well you're damned if you do refer her and you're damned if you don't!"  He meant that if she was given a formal diagnosis of dementia, there would be considerable stigma and distress attached to such a diagnosis and little in the way of treatment to help; however if she did not receive a specialist assessment, and confirmation of the diagnosis, her family may not be able to access what little appropriate support there was available. From that moment, my overriding passion was to improve both the quality and quantity of healthcare for people with dementia, and of course their family carers, who were often my patients too! 

During the next decade, I moved from being a full time GP to a budding academic, enthusiastically teaching the next generation of doctors about dementia and tentatively dipping my toe into research.  Unfortunately dementia, and particularly dementia care as opposed to finding the magic cure, was not an overly popular area of research. The proportion of research funding allocated to dementia compared to cancer was significantly lower and the majority of this was allocated to biomedical research. A return to full time clinical practice looked a distinct possibility in the very near future!

Notwithstanding in 2007, the National Audit Office report on dementia care reported worrying findings with suboptimal post diagnostic care and widespread geographical inequalities in specialist service provision. Suddenly there was a considerable policy push towards dementia with the publication of a National Dementia Policy in England (2009) followed by a Prime Minister’s Dementia Challenge (2011), the first time a single disease had been selected as the focus of such political attention. This coincided with the NIHR creating a new award, the NIHR Research Professorship, a personal 5 year programme awarded to emerging research leaders to help them develop key strategic areas of research and most importantly ultimately benefit patients and the quality of NHS care. Within two days, I had drafted my application focused on my initial personal aim of improving the quality of dementia care; my programme 'Living well with dementia' was one of the first NIHR Research Professorships to be awarded in 2012. 

Undoubtedly the political attention given to dementia, led to a shift with increased funding rapidly becoming available. Over the last few years I have considerably expanded my research team via a NIHR Programme Grant and many other, largely NIHR-funded, projects addressing the whole spectrum of dementia care from receiving a diagnosis to end of life care. In 2017 I was delighted to be awarded a NIHR Senior Investigator award for my translational research in this area and even more excited to learn of our success in the first NIHR Global Health funding awards. In August 2017, the first workshop of the NIHR Global Health Group on Dementia Care and Prevention took place with research colleagues from India, Malaysia and Tanzania and the UK meeting in Newcastle with the aim of improving dementia care in Lower Middle Income Counties. My vision had gone global…and I still haven't mastered the art of tweeting!

Looking back it is incredible to think that as a young GP the 'D' word rarely appeared as a formal diagnosis on hospital letters, with doctors as equally frightened of the diagnosis as patients.  I hope I, and my colleagues, have helped change not only quality of care but professional attitudes. More importantly I hope that dementia, which is nationally now the commonest cause of death in older women and globally a World Health Organisation public health priority, continues to enjoy its Cinderella moment in the research spotlight. The establishment of the MRC funded National Dementia Research Institute and the Alzheimer's Society Centres of Excellence in Dementia Care should help considerably!