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“It's just so important that people's voices are heard”: The dementia associate panel
Journal of Aging Studies ( IF 1.8 ) Pub Date : 2021-08-17 , DOI: 10.1016/j.jaging.2021.100958
Anthea Innes 1 , Sarah Kate Smith 1 , Megan Wyatt 1 , Sophie Bushell 1
Affiliation  

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.



中文翻译:


“倾听人们的声音非常重要”:痴呆症副小组



将痴呆症患者的观点和经历纳入研究和更广泛的决策中至关重要。探讨了一种称为痴呆症协会小组 (DAP) 的方法对其成员主观幸福感的影响。该小组基于社会公民模型,旨在提供一个平台,与英格兰地区的痴呆症患者合作并听取他们的声音。采用半结构化访谈、自我报告问卷和焦点小组的混合方法。参加人数16人;六名痴呆症患者和十名护理伙伴。参与者加入该小组的动机是基于希望听到个人的声音和经历。参加小组活动后,参与者报告说体验到了归属感和目标。


对当地卫生和护理政策的制定、教育提供、研究以及提高公众对痴呆症的认识的集体和个人贡献有利于报告的参与者的福祉。当与不同环境下的痴呆症患者一起工作时,DAP 模型有可能得到发展和调整;在全球国家或地区层面。

更新日期:2021-08-17
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