A qualitative exploration of family carer’s understandings of people with dementia’s expectations for the future

Abstract

Background

There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire.

Aim

This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care.

Method

Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis.

Findings

Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control.

Discussion

This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory.

Conclusion

Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.