INNES, Anthea, SMITH, Sarah, WYATT, Megan and BUSHELL, Sophie (2021). “It's just so important that people's voices are heard”: The dementia associate panel. Journal of Aging Studies, 59, p. 100958.
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29022:593088
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Smith-It'sJustSoImportant(AM).pdf - Accepted Version
Available under License Creative Commons Attribution Non-commercial No Derivatives.
Smith-It'sJustSoImportant(AM).pdf - Accepted Version
Available under License Creative Commons Attribution Non-commercial No Derivatives.
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Abstract
Including the views and experiences of people living with dementia in research and wider decision making is vital. The impact for the subjective wellbeing of its members of an approach known as The Dementia Associate Panel (DAP) is explored. The panel, based on a social citizenship model, aimed to provide a platform to work with and hear the voices of people living with dementia in a region of England. A mixed method approach using semi-structured interviews, self-report questionnaires, and focus groups was adopted. There were 16 participants; six people living with dementia and ten care partners. Participant motivations to join the panel were based on a desire for individuals' voices and experiences to be heard. Following participation in the panel, participants reported experiencing belonging and purpose.
Collective and personal contributions to the development of local health and care policies, education provision, research studies, and to raising general public awareness about dementia was beneficial to reported participant wellbeing. The DAP model has the potential to be developed and adapted when working with people living with dementia in different settings; at national or regional levels across the globe.
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