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

Abstract

ObjectivesSense 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/DesignThis 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.ResultsLower 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).ConclusionsThese 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.

Trajectories of relationship quality in dementia: a longitudinal study in eight European countries

“…In a longitudinal study, SOC appears to buffer the impact of carer strain on symptoms of depression and anxiety in informal carers (López-Martínez et al, 2021). This possible reciprocal association merits study, given previous findings outside caregiving contexts (Pokorski & Kuchcewicz, 2012;Volanen et al, 2004), and the potential for preventive interventions, namely targeting spouse carers with low SOC who seem to be a vulnerable group (Andrén & Elmståhl, 2008;Gonçalves-Pereira et al, 2021).…”

“…Continuing home care does not necessarily decrease SOC and positive caregiving experiences may contribute to increasing SOC (Kuroda et al, 2007). On the other hand, a stronger SOC, as a dispositional orientation, potentially protects family carers from psychological distress and may reduce the negative impact of caregiving (Childers, 2019;Del-Pino-Casado et al, 2019;Gonçalves-Pereira et al, 2021;López-Martínez et al, 2021). In a longitudinal study, SOC appears to buffer the impact of carer strain on symptoms of depression and anxiety in informal carers (López-Martínez et al, 2021).…”

Longitudinal effect of dementia carers' sense of coherence on burden

“…The main objective of the SOC and DEM study is to analyse the effect of a SOC in carers' burden and economic costs. High SOC could mitigate the accumulation of caring time in those with higher scores 38,39 . Even so, the global score of SOC trended to decline in those who remained in the study.…”

“…High SOC could mitigate the accumulation of caring time in those with higher scores. 38,39 Even so, the global score of SOC trended to decline in those who remained in the study. In fact, Antonovsky suggested that disease or stressful situations could produce a temporary decline.…”

Two sides of the same coin? Revisiting the relationship between burden and positive aspects of caregiving in dementia

“…If SC and PAC are indeed connected, would it be limited to specific aspects of PAC such as insights about life's fragility? Common measures of PAC that use likert-type rating scales [26][27][28][29][30] were reported to have very high Cronbach alphas ( e0.90), meaning the items were substantially intercorrelated. To investigate this question, a measure whereby the different PACs are not highly intercorrelated is needed so that differential relationships with SC/burden can be uncovered.…”