Positive and negative experiences of caregiving in dementia: The role of sense of coherence

Objectives Sense of coherence (SOC) is increasingly recognized as an important health determinant, particularly for mental health. Part of the evidence comes from informal caregivers in diverse clinical conditions. The extent to which SOC influences caregiving outcomes, however, is relatively under-researched in dementia, particularly regarding positive experiences. We analysed the association of SOC with dementia caregivers' subjective burden, psychological distress and positive aspects of care. Methods/Design This is a secondary analysis of cross-sectional data from the Lisbon study of Families of Persons with Dementia, involving a convenience sample of 99 primary caregivers of community-dwelling patients of neurology and psychiatry services. SOC was assessed with the Orientation for Life Scale. Measures of caregivers' outcomes were: the Zarit Burden Interview, the General Health Questionnaire for psychological distress and the Positive Aspects of Caregiving scale. Analyses controlled for demographics, caregiving arrangements, objective burden, social support, patients' neuropsychiatric symptoms and dementia stage. Results Lower SOC was associated with higher psychological distress (p= 0.001). No significant associations were found for subjective burden (p= 0.081) or positive aspects of caregiving (p= 0.688). Additional analyses showed that lower SOC was associated with less emotional support (p< 0.001) and past psychiatric illness (p= 0.044). Conclusions These findings support previous research suggesting that SOC is protective for psychological distress, and extend evidence to the positive aspects of care in dementia. The cross-sectional design and small-scale convenience sampling preclude both causality presumptions and generalizability. SOC assessments may be useful to define subgroups of dementia caregivers at risk for anxiety and depression.