Dementia Outcome Measures: Charting new territory

The project is underpinned by the understanding that there is a need for further work on outcome measurement for psychosocial dementia research that embraces new ideologies and practice in dementia care.

The project is steered by three objectives:

  • Objective one: In 2008 Interdem members published a paper on recommended outcome measures for psychosocial research across Europe (Moniz-Cook et al, 2008. doi:10.1080/13607860801919850). This has been extensively used by research and practice and now requires updating. The first objective of this project is to produce updated evidence based recommendations on the best outcome measures for psychosocial research across Europe. The update will incorporate a reconsideration of the conceptual domains for psychosocial intervention research and associated outcomes, and recommendations will be refreshed in light of the recent evidence.
  • Objective two; this is investigating needs for new outcome measures for clinical practice and research which reflect the changes in emphasis as many existing measures do not allow the person with dementia to have a voice. This objective is concerned with how measures need to change and what research might be required to achieve this.
  • Objective three: this extends across all activities and is concerned with involving young researchers and enabling them to develop their skills in collaborative European research; thereby increasing capacity in psychosocial dementia research.
    The results of the project will be published journals with open-access.

Objective one will be achieved through systematic literature reviews, and expert consensus and validation. To meet objective two those living with the condition (people with dementia and their supporters), researchers engaged in psychosocial research and dementia practitioners will be consulted about what they consider should be measured. The information will be synthesised with the evidence about new parameters for outcome measures to identify a comprehensive European research agenda. This will include needs for research into the development and testing of outcome measures for practice and research.
Programme starts: October 2014
Leader of the project: Professor Gail Mountain (UK)
Co-lead: Professor Esme Moniz-Cook (UK) and Laila Øksnebjerg (DK).
The Working Group is funded by the Danish Innovation Foundation under the aegis of JPND.