An exploration of the perceptions of younger people with dementia about hope

• Main Author: Pritchard, Jane
• Other Authors: Bartlett, Ruth ; Rivas, Carol
• Published: University of Southampton 2017
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.736665

Many people with dementia report that hope is important to them. Despite this, people with dementia experience low levels of hope and high levels of hopelessness. This experience is different from that of people with terminal illness who typically report high levels of hope. Facilitating hope in people with dementia has been described as an integral part of caring and vital to the work of nurses as well as central to person-centred care. Nevertheless, studies to date lack detail about how staff might recognise, explore and promote hope. The aim of the research was to examine the phenomenon of hope from the perspective of younger people (those under 65) with dementia, in order to generate new understanding, and enable community based healthcare professionals to support well-being. The study used a modified diary-interview method. 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. Findings have indicated that hope is important to younger people with dementia. People hoped for a future, and five themes in particular were elicited about what people hoped for; good health for themselves and others; for enjoyable events to take place; for continued contact with other people; for success in their endeavours; and for a better world. Sources of hope were: the surrounding environment; ‘taking action’; the person’s own internal resources, and keeping connected to others. An over-arching theme was ‘defying dementia’ where participants demonstrated resistance to negative stereotypes. Living with dementia did not curtail hope, although it could be weakened when participants felt ‘cast adrift’. Further research is required to ascertain whether hope should be a more central part of conversations professionals undertake with people with dementia.