A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent, and positive experiences.

BACKGROUND

Caregivers of people with dementia describe a wide spectrum of caregiving experiences, from very negative to very positive. Previous research reveals that differences exist, but how or why the experiences differ has not been well addressed.

OBJECTIVE

The purpose of this study was to explore how the experiences of spousal caregivers of people with dementia differ.

METHODS

This study was a secondary analysis of interviews collected from a longitudinal caregiver skill training intervention for caregivers of those with degenerative diseases (parent study). For the purpose of this analysis, 57 interviews from 21 spousal caregivers of people with dementia in the control group of the parent study were analyzed. The interviews from the parent study were collected at baseline, 6 months, and 12 months post-enrollment.

RESULTS

Three groups of caregivers were identified based on how they described their experience; a negative group, an ambivalent group and a positive group. The negative group described both past and present relationships with their spouse in negative terms. These caregivers expressed no positives in caregiving. Their focus was on their own unmet needs rather than their spouses' needs. These caregivers reported significant caregiving burden. The ambivalent group reported that the relationship they had with the spouse was lost, but they still described satisfaction in being able to care for the spouse. They described mixed emotions about caregiving and had difficulty accepting that their partners could no longer reciprocate in the relationship. The positive group described both their past and present relationship with the care recipient in loving terms. They focused on aspects of the relationship they still had, rather than what had been lost. They expressed satisfaction with caregiving, were other-focused, and not highly burdened by caregiving. They understood that their partner could not reciprocate, and expected nothing in return. Descriptions of the positive group suggest target areas for caregiver interventions.

CONCLUSION

Spousal caregivers of people with dementia can be encouraged toward more positive caregiving experiences through empathy-building interventions and enhanced understanding and acceptance of changes in the care recipient.