Constructing togetherness throughout the phases of dementia: a qualitative study exploring how spouses maintain relationships with partners with dementia who live in institutional care

Aims and objectives To explore and describe how spouses involve themselves in the relationship with their partners with dementia who live in institutional care. Background Positive reciprocity between partners has been proven to be significant for spouses with partners living with dementia at home. However, little is known about spousal involvement after placement of a partner in an institutional setting. This subject was therefore the focus of this study. Design Constructivist grounded theory was used to develop meaningful concepts considering the relational processes experienced and described by the spouses. Methods Interviews were conducted with 15 spouses (eight women and seven men ranging in age from 64–90 years) of dementia‐afflicted persons living in institutional care. Theoretical sampling, constant comparison and memo‐writing guided the data collection and analysis. Results The analysis showed how the spouses adopted different visiting routines to preserve continuity in their relationship throughout the phases of dementia. Three categories described how these visiting routines were used and adapted along with their partners’ dementia progressions in the process of constructing togetherness: ‘maintaining involvement and intimacy to preserve continuity in their relationship,’ ‘structuring visits to facilitate interaction and communication’ and ‘pursuing moments of mutuality to preserve continuity in a deteriorating relationship.’ Conclusions Being involved and experiencing continuity in the relationship seemed important to the spouses after their partners’ placement in institutional care. In the process of constructing togetherness, visiting routines were used to facilitate situations in which they could connect with their partners. These routines were continuously adjusted throughout the phases of dementia. Relevance to clinical practice There is a need for a systematic approach to provide sufficient support to spouses throughout their partners’ dementia progressions to assist their ongoing involvement.