‘It's in the eyes’: how family members and care staff understand awareness in people with severe dementia

Abstract

Objectives: In this study, we explored how family members and care staff understand awareness in people with severe dementia and what this awareness means to them.

Method: We conducted four focus groups between 2007 and 2009 in the UK with 11 family members and 12 care staff. Transcripts of the focus groups were analysed using thematic analysis.

Results: A model of awareness emerged in which the perceived level of awareness in the person with dementia was influenced by an interaction between attributes of the person with dementia and the environment, with expressions of awareness being hindered by environmental factors and facilitated through appropriate stimulation. Awareness did fluctuate, and differences in interpretations of awareness were linked to the meaning assigned to particular kinds of responses. For family members, awareness was intrinsically linked to their emotional connection with the person with dementia. For care staff, identifying signs of awareness helped them to do their job and enabled them to feel that they had connected with the person with dementia.

Conclusion: The findings of this study suggest that care staff would benefit from training both on identifying awareness and on providing suitable activities for people with severe dementia. Care staff and family members would also benefit from greater sharing of information about the person with dementia. This could help to enhance quality of life for person with dementia and improve quality of care.

Keywords:

• caregiving
• qualitative analysis
• focus groups
• long-term care
• quality of life

Acknowledgements

The data collection was funded by the UK Economic & Social Research Council grant RES-000-22-1308 and the Medical Research Council (UK) grant 85327. We would like to thank all the family members and care staff who participated in this study. We are grateful to Murna Downs, Rhiannon Whitaker and Barbara Wilson who were involved in design of the AwareCare trial. Particular thanks are due to Ann Chapman and Julia Rowlands for their assistance with the focus groups.