Mortality, Morbidity and Health-Related Outcomes in Informal Caregivers Compared to Non-Caregivers: A Systematic Review

Abstract

A systematic overview of mental and physical disorders of informal caregivers based on population-based studies with good methodological quality is lacking. Therefore, our aim was to systematically summarize mortality, incidence, and prevalence estimates of chronic diseases in informal caregivers compared to non-caregivers. Following PRISMA recommendations, we searched major healthcare databases (CINAHL, MEDLINE and Web of Science) systematically for relevant studies published in the last 10 years (without language restrictions) (PROSPERO registration number: CRD42020200314). We included only observational cross-sectional and cohort studies with low risk of bias (risk scores 0–2 out of max 8) that reported the prevalence, incidence, odds ratio (OR), hazard ratio (HR), mean- or sum-scores for health-related outcomes in informal caregivers and non-caregivers. For a thorough methodological quality assessment, we used a validated checklist. The synthesis of the results was conducted by grouping outcomes. We included 22 studies, which came predominately from the USA and Europe. Informal caregivers had a significantly lower mortality than non-caregivers. Regarding chronic morbidity outcomes, the results from a large longitudinal German health-insurance evaluation showed increased and statistically significant incidences of severe stress, adjustment disorders, depression, diseases of the spine and pain conditions among informal caregivers compared to non-caregivers. In cross-sectional evaluations, informal caregiving seemed to be associated with a higher occurrence of depression and of anxiety (ranging from 4 to 51% and 2 to 38%, respectively), pain, hypertension, diabetes and reduced quality of life. Results from our systematic review suggest that informal caregiving may be associated with several mental and physical disorders. However, these results need to be interpreted with caution, as the cross-sectional studies cannot determine temporal relationships. The lower mortality rates compared to non-caregivers may be due to a healthy-carer bias in longitudinal observational studies; however, these and other potential benefits of informal caregiving deserve further attention by researchers.

Barriers to home care for older adults from perspectives of Iranian informal caregivers: a qualitative study

“…3 24 25 Caring for older adults means always being on call, especially at night, which affects the caregiver's daily life, creates a feeling of pain, 3 and causes stress, adjustment disorders, depression and anxiety. 23 Caregivers in our study stated that caregiving ruined their relationships with others. They explained that caregiving made them feel stuck between being a good caregiver and being a good parent, spouse or colleague.…”

“…Other studies have reported that informal care was perceived as a heavy burden, 21 was significantly related to poor physical health 22 and could be associated with pain and sleep disorders. 23 Our participants also felt trapped by too many tasks to do for the older adults; so that they could not leave them alone to care for their personal and social relationships. They also experienced anxiety and anger, felt guilty and were ashamed of the older adults’ behaviours.…”

“…Caregiving is known as an inevitable situation that causes negative feelings 3 24 25. Caring for older adults means always being on call, especially at night, which affects the caregiver’s daily life, creates a feeling of pain,3 and causes stress, adjustment disorders, depression and anxiety 23…”

Caregiving Situation as a Predictor of Subjective Caregiver Burden: Informal Caregivers of Older Adults during the COVID-19 Pandemic

“…It is also not possible to determine temporal relationships to estimate SCB. Because most research in the area of informal care outcomes is based on cross-sectional analyses [ 135 ], future longitudinal studies should examine caregiving outcomes over time.…”

“…Many have also recruited only specific subgroups of caregivers (e.g., female or spousal). Most studies do not assess an individual appraisal of the ICs regarding their caregiving situations, or their motivations and outcomes [ 135 ]. As a response to this, our study is based on data that fit the Slovenian population of ICs aged 40 years and over.…”