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Sustaining `couplehood'

Spouses' strategies for living positively with dementia

Ersta Sköndal University College, Stockholm, Sweden, ingrid.hellstrom{at}esh.se

Mike Nolan

University of Sheffield, UK, m.r.nolan{at}sheffield.ac.uk

Ulla Lundh

Formerly of the Department of Welfare and Care, Linköping University, Sweden

This article explores the strategies that spouses use in order to live positively when one partner has dementia. Data were collected from 152 interviews with 20 couples conducted over a period of five years. Using a constructivist grounded theory methodology, data were analysed to capture the main processes involved and charted how these changed over time. Three main phases were identified termed: `sustaining couplehood'; `maintaining involvement'; and `moving on', that operated in an iterative rather than linear fashion. The data highlight the very active role played by both partners, especially in the early stages of the disease, as they strive to maintain the quality and closeness of their relationship by creating what we term a `nurturative relational context'. The diverse strategies that the couples adopt are presented, and the gradual way in which the person with dementia `hands over' or `let's go' of responsibility to their partner is described. The article provides several new insights into the nature of spousal relationships in dementia and the ways in which they seek to maximize their quality of life, and, wherever possible, sustain couplehood.

Key Words: couplehood • dementia • grounded theory • spousal relationships

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