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Innovative methods for involving people with dementia and carers in the policymaking process.

Authors
  • Keogh, Fiona1
  • Carney, Patricia2
  • O'Shea, Eamon1
  • 1 Centre for Economic and Social Research on Dementia, National University of Ireland Galway, Galway, Ireland. , (Ireland)
  • 2 Department of Public Health Midlands, Health Service Executive, Tullamore, Ireland. , (Ireland)
Type
Published Article
Journal
Health expectations : an international journal of public participation in health care and health policy
Publication Date
Jun 01, 2021
Volume
24
Issue
3
Pages
800–809
Identifiers
DOI: 10.1111/hex.13213
PMID: 33650760
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. A Policy Café was co-produced with people with dementia using a World Café methodology. A Carer's Assembly was co-produced with caregivers of people with dementia using a citizen's assembly model. Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty-eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy-makers to inform their decision making. Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co-production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy-makers. Policy-makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. People with dementia and carers were involved in study design, data analysis and presentation. © 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.

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