Objects of hope: using object elicitation to open up conversations about hope for people affected by rarer forms of dementia
Objects of hope: using object elicitation to open up conversations about hope for people affected by rarer forms of dementia
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希望的对象：使用对象引发为患有罕见痴呆症的人们开启关于希望的对话
DOI：
10.1002/alz.076209
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发表时间：
2023
期刊：
影响因子：
--
通讯作者：
Harding E
中科院分区：
文献类型：
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作者：
Harding E
背景希望是人类体验的重要组成部分，在维持幸福和良好生活质量方面发挥着至关重要的作用。然而，这似乎与围绕痴呆症的主流社会话语有些不一致，从生物医学的角度来看，痴呆症往往(自然)集中在缺陷和衰退上。随着治疗干预领域最近可喜的发展，为那些受到更罕见形式的痴呆症影响的人探索希望的概念是及时重要的，这些痴呆症的特征是非典型症状，并与独特的挑战相关，对他们来说，新出现的治疗方法可能为时已晚。在这里，我们探索了一种创新的方法-对象启发-来促进与这些代表性不足的群体就这一复杂而敏感的话题进行对话。方法17名痴呆症患者和主要照顾者参与了3次使用对象启发的促进讨论，以探索在较罕见形式的痴呆的背景下希望的概念，包括：家族性阿尔茨海默病、行为变异型额颞叶痴呆和后部皮质萎缩。研究结果被组织成4个主题：(I)在痴呆症的背景下重新构建和重新定义希望；(Ii)暂时性：从对未来的希望到在当下找到希望；(Iii)个人的希望和集体的希望；以及(Iv)硬币的另一面：失去希望、虚假的希望和希望的障碍。结论这项研究的结果揭示了一些挑战，对于那些受到不太为人所知的痴呆症影响的人来说，他们在日常生活中找到了在困难时期继续培养希望的韧性和足智多谋的能力。这些发现对患有这些疾病的其他人和无偿照顾者以及支持他们的卫生和社会护理专业人员有影响，并在当前治疗发展的背景下具有特别的相关性。这项研究还证明了客体启发方法的实用性和可及性，为与不同诊断痴呆症的人生活和支持不同痴呆症的人开启和促进关于情感主题的对话。
BackgroundHope is an essential component of the human experience and can play a critical role in sustaining wellbeing and a good quality of life. It can seem somewhat at odds however with the dominant societal discourses around dementia, which, stemming from a biomedical perspective, are often (naturally) focused on deficits and decline. With recent promising developments in the field of therapeutic interventions, it is of timely importance to explore the concept of hope for those affected by rarer forms of dementia, charactersised by atypical symptoms and associated with unique challenges, for whom emerging treatments may be too late. Here, we explored the use of an innovative methodology – object elicitation – to facilitate conversations on this complex and sensitive topic with these underrepresented groups.Method17 people affected by dementia and primary caregivers took part in 3 facilitated discussions using object elicitation to explore the concept of hope within the context of rarer forms of dementia, including: familial Alzheimer’s disease, behavioural variant frontotemporal dementia, and posterior cortical atrophy. Transcripts of the discussions were analysed thematically.ResultFindings were organised into 4 themes: (i) Reframing and reconceptualising hope in the context of dementia; (ii) Temporality: from hopes for the future to finding hope in the moment; (iii) Hope for the individual and hope for the collective; and (iv) The other side of the coin: lost hope, false hope and barriers to hope.ConclusionThe findings of this study shed light on some of the challenges to sustaining hope for people affected by lesser known forms of dementia and importantly, their resilience and resourcefulness in finding ways to continue to cultivate a sense of hope during difficult times within their everyday lives. These findings have implications for others living with these conditions and the unpaid carers and health and social care professionals supporting them, and are of particular relevance in the context of current treatment developments. This study has also demonstrated the utility and accessibility of the object elicitation method for opening up and facilitating conversations about emotionally charged topics for people living with and supporting people with different diagnoses of dementia.