Sources and perceptions of hope: a qualitative study involving younger people with dementia

Abstract

Hope is an important but overlooked phenomenon in dementia studies. Few studies have examined how people with dementia experience or perceive hope, possibly because it is seen as a diagnosis without hope. In this article, we report on a doctoral study, the aim of which was to examine the phenomenon of hope from the perspective of younger people with dementia to generate new understanding and enable community-based healthcare professionals to support well-being. The study was conducted in the Midlands, England, and used a modified diary-interview method. Six participants were given a camera and asked to take pictures of whatever made them feel hopeful. During a post-diary semi-structured interview, a conversation about hope took place. Interviews were transcribed and interpreted using the ‘Voice-Centred Relational Method’. Findings show that hope is important to younger people with dementia. Sources of hope were the surrounding environment, keeping connected, taking action, and drawing on internal resources. An over-arching theme was ‘defying dementia’ and participants demonstrated resistance to negative stereotypes. Living with dementia did not curtail hope, although it could be weakened when participants felt ‘cast adrift’ by services. The In vivo codes generated were fear of dementia, threats to identity, disconnection from others, and frustrations and restrictions. It is concluded that hope should be a more central part of practice-based conversations with people with dementia.

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ORCID for Ruth Bartlett: orcid.org/0000-0002-3412-2300

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