Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy

Abstract

Background Around 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being. Methods This comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety. Results Italian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (β = − 1.205; p = 0.029), being 40–54 years-old with depression symptoms (β = − 1.739; p = 0.003), and being female with symptoms of both depression (β = − 1.793; p < 0.001) and anxiety (β = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (β = 0.286; p < 0.000; β = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (β = 0.164; p = 0.010; β = − 1.133; p = 0.033; β = − 1.181; p = 0.031). Conclusion Multiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.

Predictors of digital support services use by informal caregivers: a cross-sectional comparative survey

“…In both countries, most of the caregivers who participated in the study were females, which is consistent with the results of previous works25–28 and with the central role played by females in the provision of informal care 2–4. In coherence with previous literature,39 41–48 the majority of Italian participants in our study provided care to a parent (in law) and spent more than 40 weekly hours of care, compared with their Swedish counterparts who provided care to spouse/partner and spent less than 10 hours per week providing care. Previous research showed that care for someone in one’s own household is more common in Southern European countries than in Northern countries.…”

“…This may be related to the lower median age of the Italian sample compared with the Swedish one. Caregivers from Southern European countries with a family-based care system often lack support in terms of formal services and professional training from the government 41–48. This shortcoming of support may increase their need for information and services.…”

“…Previous research showed that care for someone in one’s own household is more common in Southern European countries than in Northern countries. In Southern countries, caregivers are more likely to live with their care recipients who often are parents/in-laws 39 41–48. In Northern countries, in-household care is mostly spouse care, as it is rare for old persons to live with anyone else than their spouse.…”

Determinants of burden and quality of life of informal caregivers of individuals with dementia

“…Regarding the QoL of the informal caregivers included in our study, the results of EQ-5D-3L and EQ-VAS were illustrative of a very compromised QoL, where two or three domains of the EQ-5D-3L were affected (mainly the ability to perform usual activities, pain/discomfort, and anxiety/depression). In fact, previous studies reported depression symptoms among dementia informal caregivers (D'Aoust et al, 2015; Karg et al, 2018;Wulff et al, 2020). The domains of ability to perform usual activities and pain/discomfort were also the mostly affected in a recent Spanish study involving informal caregivers of PwD, however the values obtained for the means of EQ-5D-3L and EQ-VAS were extremely higher than the values obtained in our study (0.76 ± 0.22 mean for the EQ-5D-3L index score and 66 ± 13 mean EQ-VAS, comparing to 0.37 ± 0.28 and 60.7 ± 19.7, respectively, in our study) (Madruga et al, 2020).…”

Burden and benefit—A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands

“…Cultural and social factors are related to self-reported symptoms of anxiety and depression among informal caregivers. 40 We can speculate that differential emphasis on spiritual and existential elements, patient impairment (e.g., functional and behavioural) and the national health services arrangements are culturally-specific explanatory variables, however further studies are required to explore these.…”