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Patient and Public Involvement in Identifying Dementia Research Priorities.

Jennifer Bethell1, Dorothy Pringle2, Larry W Chambers3,4,5,6,7

  • 1Toronto Rehabilitation Institute, University Health Network, Toronto, Ontario, Canada.

Journal of the American Geriatrics Society
|August 8, 2018
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Summary

The Canadian Dementia Priority Setting Partnership identified top research priorities for dementia care, focusing on health, quality of life, and societal issues. These findings guide researchers and funders on crucial areas for dementia research.

Keywords:
dementiapatient and public involvementpatient engagementresearchresearch priorities

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Area of Science:

  • Gerontology
  • Public Health
  • Neuroscience

Background:

  • Dementia affects millions globally, necessitating research to improve living with the condition.
  • Prioritizing research questions is crucial for efficient and impactful dementia studies.
  • Existing prioritization efforts provide a basis for Canadian-specific research agendas.

Purpose of the Study:

  • To engage diverse stakeholders, including persons with dementia and their support networks, in identifying and ranking dementia research priorities.
  • To focus on key areas such as dementia prevention, diagnosis, treatment, and quality of life.

Main Methods:

  • The Canadian Dementia Priority Setting Partnership (PSP) employed James Lind Alliance PSP methodologies.
  • A multi-stage process involved surveys and a final prioritization workshop with key stakeholders.
  • Results were benchmarked against international prioritization exercises from the WHO and the UK.

Main Results:

  • The Canadian Dementia PSP identified a top 10 list of research priorities.
  • These priorities encompass critical aspects of dementia care, including health, quality of life, and societal impacts.
  • Five key priorities showed alignment with international research agendas.

Conclusions:

  • The identified priorities offer valuable guidance for researchers and funding bodies in dementia research.
  • This work highlights areas of significant concern and interest to those directly affected by dementia.
  • The findings do not limit future research but emphasize current stakeholder-driven priorities.