Experiences and expectations of living with dementia: A qualitative study

Abstract

Background: There is a paucity of literature detailing the expectations that people with dementia have for the future; therefore the capacity to reflect their views in service provision is limited. Aim: This paper reports the findings of research that explored and described experiences of people diagnosed with dementia and their expectations of their support needs and how they wished to live their lives. Method: An application of the grounded theory method was used and data were collected from 24 participants using semi structured interviews. Coding principles and the constant comparative method of analysis central to grounded theory were used to analyse data. Findings: The core problem that emerged was conceptualised as losing control. This concept encompassed loss of role function and independence, uncertainty about the future and fear of being a burden. To manage the problem of losing control, participants engaged in a process of finding meaning where they sought answers to address their concerns and implemented strategies to assist them to maintain connectedness to their pre-diagnosis life for as long as possible. Discussion: People with dementia have limited knowledge on a likely dementia trajectory and find it difficult to identify their future support needs. Health care providers are required to help people with dementia identify what these needs might be and how they can maintain connectedness to their pre-diagnosis life. Conclusion: To empower people living with dementia, information needs to be made available to them and their families to help them construct their plans for the future.