Trajectories of Informal Caregiving to the Oldest-old: A One-year Follow-up Study

Abstract

This study aimed to analyze caregivers and care recipients’ health characteristics and caregiving context changes during a one-year follow-up. A total of 204 informal caregivers and oldest-old care recipients ( ≥ 80 years) were assessed on two occasions, 12 months apart. Information was retrieved on the dyad’s sociodemographic profile, caregiver’s health/caregiving outcomes, care recipients’ dependency level, and caregiving context. Descriptive analysis was performed for all variables and comparisons between the two moments using paired t tests or McNemar tests. Caregiving hours, caregiver burden, and negative aspects of caregiving got significantly worse over one year. The number of unmet needs, in-home services utilization, and self-perception of mental health improved. Care recipients declined in their functional and health status and on their cognitive performance. This study provides information about caregiving trajectory changes over one year and stresses a probable caregiver adaptation even when facing increasing caregiving demands.

Transition to bereavement: A prospective longitudinal study of health-related quality of life in informal caregivers of oldest-old individuals

“…This manuscript reports the findings related to the ending of care provision caused by the death of the person in care ( Figure 1 ). Other findings from this study are described elsewhere ( 17 ).…”

“…Caregivers may experience relief, gratefulness and an overall better social functioning ( 14 , 23 , 24 ) or by the contrary, to evidence an increase in the levels of depression and anxiety, lower self-perception of health, lower social interaction unresolved regrets ( 19 , 20 , 24 , 29 ). Several studies have documented that the care provision to individuals in advanced age is particularly complex and challenging for the caregiver ( 5 , 6 , 17 ). In fact, in this study, despite the advanced age of care receivers and their high dependency levels (which could increase the caregivers’ awareness about the care receivers’ end-of-life, enabling progressive grief process), informal caregivers seem to present more difficulties to deal with the loss of the person they cared for than to continue providing care, even when the levels of dependence of care receivers increases (as seen in this study).…”

“…The current literature on informal caregiving issues ( 4 , 6 , 17 ) – including the study of informal caregiving of oldest-old individuals – tend to focus on describing the negative impacts associated with the experience (e.g., depression, physical and mental burdens). How caregivers may experience grief and bereavement has received significantly less attention.…”

“…Some differences across the results relate to time spent on caregiving (higher length of caregiving was related to a difficult bereavement), relationship to the person being cared for (adult children experienced a stronger form of grief, while the spouses’ grief was found to be quiet and sad), and/or related to the caregivers’ health condition and burden (poorer health condition and higher burden increased caregiver grief). These findings suggest that this period can be particularly demanding for informal caregivers of oldest-old individuals because care provision is usually long-lasting ( 20 , 31 ), intensive ( 21 , 32 ), more burdening ( 5 ) and the caregiver usually presents a vulnerable health condition (e.g., concomitant diseases, many medicines intake) ( 4 , 17 ). Besides, high mortality rates are found in oldest-old individuals ( 33 , 34 ) which probably increases the proportion of informal caregivers experiencing such an event and therefore may also increase the number of individuals at risk.…”

“Informal Caregiver” in Nursing

“…“Role” was the essential attribute of the concept “informal caregiver.”2,6–10,13–40 This role was “dyadic”: a person could not adopt the role of an informal caregiver, without another person being the receiver of his or her care 13,20,22,27,28,35,36,40. However, this dyadic role was rarely described as a caregiving “partnership” between the informal caregiver and care receiver.…”