Title:
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Women's understandings of their relationship with their husband in the early stages of his gradual onset dementia
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Objectives: This study attempted to conceptualize women's understandings of the
changes in their marital relationship in the first six months following a husband's
diagnosis of gradual onset dementia, the nature and mechanism of transition to the role of
caregiver, and the construal of the marriage in contrast to other care oriented
relationships.
Method: Six wives whose husbands had been diagnosed with gradual onset dementia in
the previous six months participated. The qualitative techniques of grounded theory and
data displays were applied to data derived from qualitative semi-structured interviews.
This data was triangulated with rated repertory grids of care relationships, analyzed using
a variant of INGRID.
Results: The qualitative analysis yielded six significant categories pertaining to the
research questions, organized temporally. A pre-existing relationship was punctuated
unexpectedly by changes in a husband (catalysts) to which a wife reactively responded
(adjustments of power and intrapersonal processes, and emotional consequences). This
dynamic and continuous process driven by a husband's deterioration was termed 'role
making'. A tripartite typology of pre-existing informal marital contracts emerged from
the data underpinned by dimensions of 'power' and 'merging of identity'. This had
utility in predicting the emotional consequences a wife was likely to experience, and the
catalysts proving to be problematic, but not endorsement of a 'wife' or 'caregiver' role.
The repertory grid analysis revealed that none of the wives replicated wholesale a
'parental' mothering model in caring for their husbands, but integrated aspects of
different prior caring experiences in a flexible way, in accordance with situational
demands.
Conclusion: Wives' adjustments in the relationship, and the emotional impact of caring
for a husband in the early stages of dementia are significant, and largely
una~knowledged. There is also a need for the recognition of the importance of the
marital relationship, beyond a predetermined definition of 'quality'.
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