Electronic versions



  • Lucy Webster
    University College London
  • Derek Groskreutz
    University College London
  • Anna Grinbergs-Saull
    Alzheimer's Society
  • Rob Howard
    University College London
  • John T. O'Brien
    University of Cambridge
  • Gail Mountain
    University of Sheffield
  • Sube Banerjee
    University of Sussex
  • Robert Woods
  • Robert Perneczky
    Imperial College London, UK
  • Louise Lafortune
    University of Cambridge
  • Charlotte Roberts
    International Consortium for Health Outcomes Measurement
  • Jenny McCleery
    Oxford Health NHS Foundation Trust
  • James Pickett
    Alzheimer's Society
  • Frances Bunn
    University of Hertfordshire
  • David Challis
    University of Manchester
  • Georgina Charlesworth
    University College London
  • Katie Featherstone
    Cardiff University
  • Chris Fox
    University of East Anglia
  • Claire Goodman
    University of Hertfordshire
  • Roy Jones
    University of Bath
  • Sallie Lamb
    University of East Anglia
  • Esme Moniz-Cook
    University of Hull
  • Justine Schneider
    University of Nottingham
  • Sasha Sheppard
    University of Oxford
  • Claire Surr
    Leeds Beckett University
  • Jo Thompson-Coon
    University of Exeter Medical School
  • Clive Ballard
    King's College London
  • Carol Brayne
    University of Cambridge
  • Orlaith Burke
    University of Oxford
  • Alistair Burns
    University of Manchester
  • Linda Clare
    University of Exeter Medical School
  • Peter Garrard
    University of London
  • Patrick Kehoe
    University of Bristol
  • Peter Passmore
    Queen's University, Belfast
  • Clive Holmes
    University of Southampton
  • Ian Maidment
    Aston University
  • Fliss Murtagh
    King's College London
  • Louise Robinson
    Newcastle University, UK
  • Gill Livingston
    North Thames CLAHRC, London
In the UK, around 850,000 people have dementia. If a treatment can change the underlying pathology of dementia this is called disease modification, although no trials have yet found effective disease-modifying treatments. Trials have used differing outcome measures to evaluate if a treatment works, making it difficult to compare and contrast results. To address this issue we aimed, in collaboration with the UK dementia research community and the Alzheimer’s Society’s Research Network, to develop a core set of outcome measures for use in future disease-modifying trials for mild to moderate dementia.
We looked at the outcomes used across completed and ongoing disease modification trials and found measures in six test areas: cognition, biological, behaviour, quality of life, activities of daily living and global. We used these findings to conduct a small consultation with people living with dementia and family carers. We presented all results at our consensus conference and discussed them to reach our conclusions.
We recommend that the core set of outcome measures should include a cognitive measure, namely the Mini Mental State Examination or the Alzheimer’s Disease Assessment Scale – Cognitive subscale, and an optional magnetic resonance imaging scan looking at brain structure as a biological measure. We have specified measures for the other areas that are important but not core. The recommendations may change as new measures are developed, and, as most of the trials included participants with Alzheimer’s disease only, recommendations need to be developed for different dementias. They apply only to mild to moderate stages of dementia.
Original languageEnglish
Number of pages226
JournalHealth Technology Assessment
Issue number26
Publication statusPublished - May 2017

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