The meaning and experience of hope by people living with dementia as expressed through poetry

Abstract

Background Narratives of dementia can undermine the ability of people to live well. Positive psychology, concerned with the cultivation of personal strengths, is a model through which people’s capacity to have positive experiences can be researched. This study explored the meanings and experiences of hope, a positive psychological construct found to facilitate well-being, in people with dementia. Methods People with dementia submitted poems about the meanings and their experiences of hope through an online platform. The submitted poems ( n = 29) underwent thematic analysis. Findings There were three main themes: (1) “ hope is light in the darkness” encapsulated the meaning ascribed to hope as a resource that spotlights what is still possible, (2) “ poetry gives voice to experiences of hope” captured the role of poetry in communicating the otherwise elusive concept of hope, and (3 )“peers uphold hope and cast away the darkness” captured that participants’ hope was blocked by stigmatising views held and expressed by others but facilitated through positive social interactions. Conclusions People are capable of having hope in the context of dementia, with hope being a uniquely functional strength that supports wellbeing. Health professionals, family and society have a clear role in supporting people with dementia to maintain their hope.