Mapping the UK’s Dementia Research Landscape and Workforce Capacity

Illustration of Alzheimer's Disease

Illustration by Stephen Magrath, Wellcome Images/CC BY-NC-ND 4.0

Background

According to a recent report from the Global Observatory for Ageing and Dementia Care, the number of people with dementia worldwide will rise from 36 million in 2010 to 115m in 2050. In the UK, the Alzheimer’s Society has estimated that one in 14 people over age 65 currently have dementia.

Several governments, including the UK government, have announced commitments to increase funding for dementia research and innovation, with a goal to find a treatment or cure, and to improve the management of the condition through the way health and social care is delivered. It is vital that this funding be allocated effectively, building on existing strengths and targeting research gaps.

This study, commissioned by the Alzheimer’s Society, aims to help inform a blueprint for investing in dementia research and in the research workforce.

Goals

The study sought to answer the following questions:

  • What types of research on dementia are being carried out in the UK?
  • How does the UK perform in comparison to global benchmarks?
  • What does the UK dementia research workforce look like?
  • What are the associated strengths and gaps in this landscape?
  • What are the capacity-building priorities and how can they be met?

Challenges and Solutions for the Dementia Research Community in the UK

Strengths

The UK produces 12% of all dementia research publications, making it second in the world.

There are pockets of excellence in:

  • genetics
  • brain imaging
  • psychosocial intervention
  • Lewy body dementia
  • cohort studies and epidemiology
  • amyloid hypothesis

There is definite momentum building, which is fantastic, but we need to learn from the past.

- Psychiatrist

Gaps, Challenges and Views from the Ground

  • Too few researchers choose to work on dementia.
  • Many researchers leave dementia.
  • Too few clinicians do dementia research.
  • There are not enough dementia care researchers.
  • Dementia costs the UK economy £26bn a year, but we only invest £74m a year in dementia research.
  • 70% of dementia researchers leave the field within 4 years of completing a PhD.
  • Barriers include:
    • time
    • insufficient research training in medical education
    • short-term research contracts
    • research undervalued in clinical settings
  • Fewer than 15% of active dementia researchers have an NHS, Allied Health Professional (AHP) or social care affiliation.

People may think there isn't much to be done for people with dementia.

- Psychologist

I really love the research, but the pressure of constantly having to apply for money is putting me off.

- Neuroscientist

Today, it's really hard to combine NHS work and research as I could in the past.

- Psychologist

It is difficult to develop research careers in the allied health professions.

- Psychiatrist

Attitudes act as a barrier to dementia research careers.

- Psychologist

There are simply no lectureships to apply for.

- Neuroscientist

Clinicians are stretched to the limit doing their day job, so finding time for research is difficult.

- Genetics researcher

Working with people with dementia is still not seen as a career path of choice.

- Nursing/AHP/care professional

Solutions

To attract more researchers:

  • Change negative perceptions by celebrating milestones.
  • Doctoral training centres.

To retain more researchers:

  • Rising star programme.
  • Professional development and leadership training.
  • Bridge funding.

To encourage clinicians to do research:

  • Raise the profile of dementia research in the NHS.
  • More flexible clinical fellowships.

To support more care researchers:

  • More PhD opportunities for allied health and social care professions.

Infographic based on Challenges and solutions for the dementia research community.

Methodology

To help enrich the current evidence base, RAND Europe conducted:

  1. A bibliometric analysis of the UK dementia research landscape to understand strengths of limitations. This examined different fields of dementia research and different types of dementia disease
  2. An analysis of the dementia workforce pipeline (from PhD to senior researcher levels) to understand career pathways and the composition and profile of the current dementia research workforce
  3. A forward-looking assessment of the research system and workforce capacity in terms of strengths, gaps and opportunities

The project involved a combination of desk research, bibliometric analysis, a career tracking exercise and 40 key informant interviews. We collaborated with Science Metrix on the bibliometric elements of the study.

Findings

Using this methodology, the team made a wide range of findings, including:

  • The UK is second in the world in terms of the amount of the dementia research knowledge it generated in the 1980-2013 period, as measured by the number of journal publications.
  • UK dementia research is fertile and influential, but amongst the top 30 countries, the UK ranks somewhat higher on the volume of dementia research publications it produces than on the citation impact of its dementia research portfolio.
  • 60.5 % of UK dementia publications are in Alzheimer’s disease and there is a high concentration of research in the clinical medicine field.
  • Approximately one fifth of dementia PhD graduates remain in dementia research. For recent graduates, approximately 70% leave dementia research within four years of completing their PhD.
  • Interviewees identified key strengths of UK dementia research to include influential studies in genetics, brain imaging, Lewy body dementia, psychosocial interventions and person-centred care, epidemiological cohort studies and research on the amyloid hypothesis and amyloid fibril formation. However, in some of these areas, the volume or research activity is low.
  • Key challenges for advancing UK dementia research include a limited understanding of the cellular mechanisms underlying dementia, low clinician involvement in research, underinvestment in care related research, scope for improvement in the conduct of clinical trials, scope for greater emphasis on translational research, and the relatively low profile and impact in familial and early-onset dementia.
  • Various mechanisms to support dementia research careers exist, but need scaling-up. We propose four core areas for intervention and ten actions to support dementia research capacity-building effort.

Project Team

Sonja Marjanovic
Enora Robin
Catherine Lichten
Emma Harte

Read the full study