Engaging People With Lived Experience of Dementia in Research: Perspectives From a Multi-disciplinary Research Network.

Background Patient and public involvement/engagement in research on dementia is not new, but it is becoming increasingly common. The objective of this study was to describe researchers' knowledge, attitudes, and activities related to engaging people with lived experience of dementia in research, and...

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Published in:Canadian Geriatrics Journal Vol. 25; no. 3; pp. 254 - 262
Main Authors: Bechard, Lauren E., McGilton, Katherine S., Middleton, Laura E., Chertkow, Howard, Sivananthan, Saskia, Bethell, Jennifer
Format: research tables/charts Journal Article
Published: Canadian Geriatrics Society Sep2022
Online Access:View this record in EBSCOhost
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      dt: Sep2022
      vid: 25
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      pid: 76420
      pub: Canadian Geriatrics Society
      place: Markham, Ontario
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        atl: Engaging People With Lived Experience of Dementia in Research: Perspectives From a Multi-disciplinary Research Network.
      aug:
        au:
          Bechard, Lauren E.
          McGilton, Katherine S.
          Middleton, Laura E.
          Chertkow, Howard
          Sivananthan, Saskia
          Bethell, Jennifer
        affil: Canadian Consortium on Neurodegeneration in Aging
      sug:
        subj:
          Dementia
          Research, Medical
          Dementia Patients
          Research Subject Recruitment
          Research Personnel
          Professional Knowledge Evaluation
          Attitude of Health Personnel Evaluation
          Human
          Research, Interdisciplinary
          Surveys
          Research Methodology
      ab: Background Patient and public involvement/engagement in research on dementia is not new, but it is becoming increasingly common. The objective of this study was to describe researchers' knowledge, attitudes, and activities related to engaging people with lived experience of dementia in research, and how these differ by research theme. Methods Data were from an online, anonymous survey of researchers within the Canadian Consortium on Neurodegeneration in Aging. Results Of the 84 researchers who completed the survey (response rate: 27%), 89% agreed they understood the meaning of engaging people with lived experience in research, although this was lower among biomedical researchers. Almost all (93%) agreed that people with lived experience could con- tribute meaningfully to research, and nearly two-thirds were already incorporating engagement in their research. Some engagement practices reported differed by research theme. Irrespective of the type of research they conduct, researchers were most often motivated by improving the relevance and quality of their research. Conclusions These findings support an optimistic outlook for engaging people with lived experience of dementia in research, but identify differences across research themes. Understanding approaches to incorporate, evaluate, and adapt engagement activities across research disciplines are needed to enable researchers, as well as others involved in research, to develop and target strategies for patient and public involvement/engagement in research on dementia.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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