This article explores the strategies that spouses use in orderto live positively when one partner has dementia. Data werecollected from 152 interviews with 20 couples conducted overa period of five years. Using a constructivist grounded theorymethodology, data were analysed to capture the main processesinvolved and charted how these changed over time. Three mainphases were identified termed: `sustaining couplehood'; `maintaininginvolvement'; and `moving on', that operated in an iterativerather than linear fashion. The data highlight the very activerole played by both partners, especially in the early stagesof the disease, as they strive to maintain the quality and closenessof their relationship by creating what we term a `nurturativerelational context'. The diverse strategies that the couplesadopt are presented, and the gradual way in which the personwith dementia `hands over' or `let's go' of responsibility totheir partner is described. The article provides several newinsights into the nature of spousal relationships in dementiaand the ways in which they seek to maximize their quality oflife, and, wherever possible, sustain couplehood.

The value of the single case study is well established in dementiacare with the seminal contributions of Alzheimerand Kitwood being based on the study of individuals.This article presents a case study of an elderly married coupleliving with dementia and explores how theirrelationship has continued to flourish. In drawingon their story we highlight ways in which both partners seekto ‘maintain involvement’ of theperson with dementia (PWD) (Keady, 1999), andconsider the various types of ‘work’ that is required. We suggest that whilst the ‘personhood’of the PWD as an individual has received muchrecent attention, a consideration of ‘couplehood’is also essential to a full understanding of how spouses live with and respond to the impact of dementia.

This article presents the initial results of an ongoing constructivistgrounded theory study (Charmaz, 2000) exploringthe impact of dementia on the everyday life and relationships of older spousal couples. Using a processof ‘emergent fit’ (Glaser, 1978)and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevanceof ‘awareness context theory’ (Glaser& Strauss, 1965) and the ‘dynamicsof dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combinationof existing literature and new data providefurther insights into how couples actively work to ‘construct’ awareness in a way that, forthe majority, maintains both a sense of ‘self’for the person with dementia (PWD) and the integrityof the relationship between couples. It is suggested that a‘mutual acknowledgement’ of thediagnosis and a subsequent focus on maintaininga meaningful life in the present combine to create a ‘nurturative relational context’ in whichliving with dementia unfolds.

People with dementia have previously not been active participantsin research, with ethical difficulties often being cited asthe reason for this. A wider inclusion of people with dementiain research raises several ethical and methodological challenges.This article adds to the emerging debate by reflecting on theethical and methodological issues raised during an interviewstudy involving people with dementia and their spouses. Thestudy sought to explore the impact of living with dementia.We argue that there is support for the inclusion of people withdementia in research and that the benefits of participationusually far outweigh the risks, particularly when a `safe context'has been created. The role of gatekeepers as potentially responsiblefor excluding people with dementia needs further consideration,with particular reference to the appropriateness of viewingconsent as a primarily cognitive, universalistic and exclusionaryevent as opposed to a more particularistic, inclusive and contextrelevant process.