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Methods for Involving People With Dementia in Health Policy and Guideline Development: A Scoping Review.

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Summary

People with dementia are often excluded from health policy involvement. This review found limited dementia-adapted methods, highlighting a need for better approaches to include their voices in macro-level care decisions.

Keywords:
dementiaguidelinehealth policypatient and public involvementpublic engagementscoping review

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Area of Science:

  • Gerontology
  • Public Health Policy
  • Health Services Research

Background:

  • Patient and Public Involvement (PPI) is crucial for healthcare, research, and policy.
  • People with dementia are often excluded from PPI initiatives, particularly at the macro-level of health policy and guideline development.
  • Limited evidence exists on the involvement of people with dementia in macro-level care decision-making.

Purpose of the Study:

  • To map the evidence on patient and public involvement (PPI) of people with dementia at the macro-level of care.
  • To identify and categorize methods used for involving people with dementia in health policy and guideline development.
  • To examine the outcomes and mechanisms of involvement for people with dementia in macro-level care.

Main Methods:

  • Systematic search of multiple databases (MEDLINE, CINAHL, Cochrane Library, GeroLit).
  • Inclusion of forward and backward citation searching, manual tracking, abstract book searches, and author contact.
  • Analysis of involvement methods, focusing on mechanisms for effective information transfer and structured synthesis of contributions.

Main Results:

  • 43 reports identified 35 involvement methods, categorized into six types (e.g., focus groups, surveys, meetings).
  • Most involvement occurred during early policy/guideline stages and required verbal communication; participants typically had mild dementia.
  • Reporting of involvement outcomes was often unclear, and only nine methods used structured synthesis of contributions.

Conclusions:

  • Evidence for dementia-adapted involvement in macro-level care is limited.
  • Future research should explore mechanisms to adapt methods for individuals with impaired communication or advanced dementia.
  • Incomplete reporting of PPI initiatives hinders reproducibility; adherence to existing guidance is recommended.