Identity, relationship quality, and subjective burden in caregivers of persons with dementia.

The aim of the current study was to examine the associations between informal caregivers' perception of identity change in their care-partner, the quality of the caregiver/care-recipient relationship, and caregiver burden in a sample of 56 informal caregivers of persons with dementia. Most (96.4%) of the caregivers of persons who received a dementia diagnosis reported a perceived change in the identity of their care-partner. Caregivers' perception of relationship satisfaction was measured with the Burns Relationship Satisfaction Scale for premorbid relationship and current relationship quality, and caregiver burden was measured with the Zarit Burden scale. After controlling for variance due to dementia severity, premorbid relationship satisfaction, and current relationship satisfaction, caregivers' perceived change in the identity of the person with dementia accounted for significant variance in caregiver burden. Using a mediational model, we found support for a direct effect between perceived change in identity and caregiver burden, but we also found support for an indirect effect of relationship quality on the relation between perceived identity change and caregiver burden. The demonstrated model provides an empirically supported theoretical framework for guiding potential research and development of future interventions, which we suggest should emphasize dyads.

Protocol for a meta-integration: investigating positive aspects of caregiving in dementia.

INTRODUCTION: The current work describes the protocol for a meta-integration investigating the positive aspects of providing care to someone living with dementia. We aim to understand the position of positive aspects in the caregiver experience as well as identify how positive aspects are commonly conceptualised, investigated and measured in literature. METHODS AND ANALYSES: Meta-integration is a method of investigation that synthesises findings from meta-analysis or systematic review of quantitative studies and meta-synthesis of qualitative studies, to provide a coherent and holistic account of a phenomenon. As a relatively new method, terminology and methodological approaches are varied. The current work describes the process of conducting an advanced convergent meta-integration, including protocol for systematic search, inclusion/exclusion screening phases, intramethod analysis synthesis and intermethod synthesis on quantitative, qualitative and mixed methods research pertaining to the positive aspects of providing care to someone living with dementia. ETHICS AND DISSEMINATION: There are no ethics or safety concerns about dissemination, which includes plans for a conference presentation and publication.

Variance in caregiver burden predicted by patient behaviors versus neuropsychological profile.

Informal caregivers provide the majority of care to persons with dementia; efforts to support caregivers' well-being are increasingly important in the context of limited formal healthcare supports. Informal caregiving is commonly associated with caregiver burden and burden may depend upon patient characteristics including neuropsychological profile, dementia severity, and dementia etiology. This study investigated predictors of caregiver burden in a sample of 213 Memory Clinic patients diagnosed with dementia and whose caregivers provided collateral information. Caregiver burden was similar irrespective of dementia etiology. Beyond the expected predictive value of dementia severity on caregiver burden, patient behavioral symptoms, functional dependence, and caregiver psychological distress were predictive of caregiver burden. In contrast, care-recipient neuropsychological performance did not predict burden. These findings suggest that beyond severity of dementia, specific behavioral disturbances predict caregiver burden which may have implications for programming and intervention aimed at supporting and sustaining caregivers in their role.

Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role.

Factor Analysis of the 12-Item Zarit Burden Interview in Caregivers of Persons Diagnosed With Dementia.

The Zarit Burden Interview (ZBI) is commonly used to measure dementia caregiver burden, but its factor structure is unclear. A two-factor structure for the 12-item ZBI, "personal strain" and "role strain," has been shown, but recent data suggest that an additional factor of "guilt" is embedded in the "role strain" items. The 12-item ZBI administered to 194 informal rural and urban caregivers of persons diagnosed with dementia was analyzed using exploratory factor analysis. A two-factor structure, with item loadings consistent with previously conceptualized constructs of "personal strain" and "role strain," was found. Moreover, this factor structure was invariant to caregiver subgroups. When the predictive value of these factors was explored, only "personal strain" was important in predicting caregiver psychological distress, measured with the Brief Symptom Inventory. However, "role strain," which included the hypothesized "guilt" items, did not appear to be an important predictor of caregiver distress.