‘I hate having nobody here. I’d like to know where they all are’: Can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive impairment?

Abstract

Objective: To ascertain if similarities or differences exist in perceptions of quality of life (QoL) amongst nursing home (NH) residents with different levels of cognitive impairment (CI).

Method: Face-to-face interviews using a simple 15-item semi-structured interview schedule with 61 older people with a CI (13 mild, 20 moderate and 28 severe) living in three Dublin area based NHs.

Results: Four key themes of QoL with accompanying sub-themes were identified: (1) social contact, (2) attachment, (3) pleasurable activities and (4) affect. Whilst some similarities existed between the three groups, results showed emerging differences, particularly between those with a mild and severe CI. In particular, the narratives of those with a severe CI reflected an absence of social contact, a quest for human contact and a lack of awareness of structured pleasurable activities. A large majority also reported feelings of loneliness, isolation and a search for home.

Conclusions: Findings support the increasing evidence that people with a CI and even those with a probable advanced dementia can often still communicate their views and preferences about what is important to them. Whilst apathy, depression and anxiety are common features of advanced dementia, the social inclusion of these people in the day-to-day ethos of NH life needs a lot more careful consideration. More research is also needed to better understand the chronic and unique needs of this very vulnerable group of people.

Keywords:

• cognitive impairment
• quality of life
• nursing home residents
• qualitative research

Acknowledgements

The authors acknowledge the very valuable contributions of the residents who took time to participate and thank the NHs managers and staff for their help. This work is part of the Dementia Services Information and Development Centre's Living with Dementia Program based in the School of Social Work and Social Policy at Trinity College, Dublin. This work is supported by a research grant from the Atlantic Philanthropies.

Notes

1. See ‘Methods’ section of earlier paper (Cahill et al., 2010).