Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: A cross-sectional study

Background: Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations. Methods: A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses. Results: Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC. Conclusions: Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time

Unravelling complex primary-care programs to maintain independent living in older people: a systematic overview

textabstractObjectives: Complex interventions are criticized for being a “black box”, which makes it difficult to determine why they succeed or fail. Recently, nine proactive primary-care programs aiming to prevent functional decline in older adults showed inconclusive effects. The aim of this study was to systematically unravel, compare, and synthesize the development and evaluation of nine primary-care programs within a controlled trial to further improve the development and evaluation of complex interventions. Study Design and Setting: A systematic overview of all written data on the nine proactive primary-care programs was conducted using a validated item list. The nine proactive primary-care programs involved 214 general practices throughout the Netherlands. Results: There was little or no focus on the (1) context surrounding the care program, (2) modeling of processes and outcomes, (3) intervention fidelity and adaptation, and (4) content and evaluation of training for interventionists. Conclusions: An in-depth analysis of the context, modeling of the processes and outcomes, measurement and reporting of intervention fidelity, and implementation of effective training for interventionists is needed to enhance the development and replication of future complex interventions