ABSTRACT

Ethical research practice requires inclusionary approaches that enable people to contribute as fully as possible. Not enough is yet known about the impacts of dementia on daily life, however, people with dementia may find inclusion in research challenging, as the ‘cognitive load’ required may be overwhelming. When responding is difficult, others may contribute and the voice of people with dementia may be diminished. In this paper, the method of walking interviews is reflected on following a study that examined the acceptability and usefulness of Global Positions Systems (GPS). Attention is drawn to an observation of the contributions people with dementia made whilst out walking with the researchers. When out walking, people with dementia used the environment as sensory prompts to start conversations, and these discussions shaped research data, and enabled people with dementia to raise concerns about the impacts of dementia, their futures and what they feared for themselves and their families. The challenges that people with dementia faced in negotiating everyday practices were visible. The person with dementia showed the researcher around their neighbourhood, and this significantly changed the interview dynamic and positioned people with dementia as leading the interaction.

摘要

伦理研究实践需要包容性方法，以使人们能够尽可能地做出贡献。对于痴呆症对日常生活的影响还知之甚少，但是，痴呆症患者可能会发现将其纳入研究工作具有挑战性，因为所需的“认知负荷”可能是压倒性的。当难以应对时，其他人可能会做出贡献，痴呆症患者的声音可能会减弱。在本文中，走访访谈的方法体现在一项研究中，该研究检查了全球定位系统（GPS）的可接受性和实用性。请注意观察与研究人员一起散步时痴呆症患者所做的贡献。外出散步时，痴呆症患者会利用环境作为感官提示来开始对话，这些讨论形成了研究数据，并使痴呆症患者对痴呆症的影响，他们的未来以及他们对自己和家人的恐惧感到担忧。痴呆症患者在日常实践中面临的挑战显而易见。痴呆症患者向研究人员展示了他们周围的人，这极大地改变了访谈的动态，并将痴呆症患者定位为领导互动的对象。