Freedom and loneliness: dementia caregiver experiences of the nursing home transition

Abstract

Background: the transition to nursing home care has previously been linked to negative outcomes for spousal caregivers of persons with dementia (PwD). However, little is known about the experience or trajectory of loneliness in spousal caregivers during this time.

Objectives: to explore experiences of loneliness in caregivers during the nursing home admission of their spouse or partner with dementia.

Methods: semi-structured interviews were conducted with 11 individuals living in Ireland between Oct 2020 and June 2021, who were married to/partnered with a PwD who had, in the past 7 years, moved to full-time nursing home care. Data were collected and analysed using a deductive qualitative analytic strategy in the grounded theory tradition.

Results: data were interpreted in the context of Weiss' typology of social and emotional loneliness and indicated that social loneliness increased for many at the point of diagnosis, decreasing somewhat after the transition, while emotional loneliness increased across the transition. Data were used to refine an existing synthesised model of loneliness, providing an updated model of the causes and contexts of loneliness.

Conclusions: the transition to nursing home care differentially affects loneliness subtypes. Results have implications for other transitions, which should be assessed in terms of various subtypes of loneliness. Our refined theoretical synthesis model of loneliness also warrants further evaluation.

Keywords: caregiving; deductive qualitative analysis; health transitions; institutionalisation; interviews; loneliness; nursing home; older people; qualitative research.

Figure 1

Flowchart of Participant Recruitment to study (between June 2020 and October 2021).

Figure 2

Refined synthesised model of loneliness with four intraindividual level causal factors in loneliness operating in the broader interindividual contexts.