Formal and Informal Care Use Over the Course of Cognitive Deterioration Among Adults With a Disability

The dynamics between formal and informal care among persons with a disability may substantially differ over the course of their cognitive decline. Based on a nationally representative study of older adults, the analysis sample included 3,685 individuals who had at least one activity of daily living (ADL) limitation. We estimated probabilities of using formal care and informal care in the years before and over the course of dementia after controlling for sociodemographic factors, survey mode, and proxy interview status. The adjusted probability of receiving care from an informal helper increased before the onset of dementia: 36% in 4 years prior to the onset (T=-4); 46% at T=-2. In contrast, the increase in the probability of using formal care was pronounced primarily at the onset of dementia; for example, the probability of overnight nursing home stay was 12% at T=-2 vs. 31% at T=0, which continued to increase over the subsequent years (39% at T=6). The probability of using nursing home care at the onset was significantly greater for women vs. men (Adjusted risk ratio (ARR)=1.21; p=0.010); non-Hispanic white vs. Hispanic (ARR=1.62; p=0.004); those with low vs. high wealth (ARR=1.60; p < 0.001); those without a spouse vs. with a spouse prior to the onset (ARR=1.39; p < 0.001); and those with all adult children living far vs. at least one coresident adult child prior to the onset (ARR=1.51; p= < 0.001). Public policies and interventions aimed at providing for the needs of people with dementia should consider disparities in care use across racial/ethnic and socioeconomic groups.

Virtual team-based care planning with older persons in formal care settings: a scoping review protocol

IntroductionCOVID-19 has necessitated greater adoption of virtual care (eg, telephone (audio), videoconference) delivery models. Virtual care provides opportunities for innovative practice in care planning with older persons and meaningful family engagement by synchronously involving multiple care providers. Nevertheless, there remains a paucity of summarising evidence regarding virtual team-based care planning for older persons. The purpose of this scoping review is to summarise evidence on the utilisation of virtual team-based care planning for older persons in formal care settings. Specifically, (1) what has been reported in the literature on the impact or outcomes of virtual team-based care planning? (2) What are the facilitators and barriers to implementation?Methods and analysisThis scoping review will follow a rigorous and well-established methodology by the Joanna Briggs Institute, supplemented by the Arksey & O’Malley and Levac, Colquhoun, & O’Brien frameworks. A three-step search strategy will be used to conduct a search on virtual team-based care planning for older persons in formal care settings. Keywords and index terms will be identified from an initial search in PubMed and AgeLine, and used to conduct the full search in the databases PubMed, EMBASE, CINAHL, AgeLine, PsycInfo and Scopus. Reference lists of included articles and grey literature retrieved through Google and Google Scholar will also be reviewed. Three researchers will screen titles and abstracts, and will conduct full-text review for inclusion. Extracted data will be mapped in a table.Ethics and disseminationResearch ethics approval is not required for data collection from publicly accessible information. Findings will be presented at conferences, submitted for open-access publication in a peer-reviewed journal and made accessible to multiple stakeholders. The scoping review will summarise the literature on virtual team-based care planning for the purpose of informing the implementation of a virtual PIECES™ intervention (Physical/Intellectual/Emotional health, Capabilities, Environment, and Social).

517 - Informal and Formal Depression Care in Nursing Homes (InFormeD): Study protocol of a six month cohort study to better match treatment with residents

Background:Depression is common among nursing home residents and has a considerable impact on their quality of life. Therefore, there has been an increased interest in interventions aiming at the reduction of depression among nursing home residents. These interventions could be categorized into formal and informal depression care. Formal care includes psychosocial, psychotherapeutic and/or (neuro-)biological interventions. Informal care can be provided by nursing home staff, alongside the formal care (e.g., letting sunlight into the room when one believes in the positive effects of daylight). Although many studies have been done about depression treatment in nursing homes, there is still a lack of insight into the effectiveness of interventions and how they differ among specific target groups (e.g., residents with cognitive impairment versus residents with physical disabilities). Moreover, research into informal care is rather rare. More insight is needed into the effect of formal and informal depression care and the mutually reinforcing effects of those strategies on nursing home residents. This insight is essential to better match treatments with residents and to provide a more comprehensive approach to counter depression.Objectives:The aim of this study is to gain insight in the use of formal and informal depression care and their associations with depression among nursing home residents.Design:A six month cohort study will be conducted.Method:Residents will be recruited in nursing homes across the Netherlands and Flanders (Belgium). To measure formal and informal care, newly developed tools will be cross-culturally validated: one to assess the provided formal care in nursing homes, two tools for measuring the used informal strategies. Depression outcomes will be measured with the Geriatric Depression Scale, Cornell Scale for Depression in Dementia, and the Nijmegen-Observer-Rated Depression-scale). Baseline measurements and cross- sectional analyses will be performed and repeated after six months. The intended associations will be assessed using multiple regression analysis.Conclusion:To develop a good depression care policy, a more comprehensive approach is needed and may benefit both residents and staff.

The consequences of COVID-19 lockdown for formal and informal resource utilization among home-dwelling people with dementia: results from the prospective PAN.DEM study

Background COVID-19 isolated home-dwelling people with dementia (PwD) from home care services, respite care, and daytime activities. We aimed to investigate the consequences of these restrictions on informal (family, friends) and formal (homecare staff) resource utilization among co-residing (e.g., spouses) and visiting caregivers (e.g., children). Methods 105 PwD (≥65 years old) and their caregivers were included in the prospective PANdemic in DEMentia (PAN.DEM) study, which was initiated when the ongoing stepped-wedge, cluster randomized [email protected] trial (N = 438) was temporarily halted due to the pandemic. Primary outcome was change in resource utilization assessed by the Resource Utilization in Dementia Care (RUD) instrument in pre- (12 Dec. 2019 to 11 Mar. 2020) and during the lockdown periods (20 April 2020 to 15 May 2020). Degree of cognitive impairment was assessed by Mini-Mental Status Examination (MMSE), and physical functioning and independent living skills by Physical Self-Maintenance Scale and Lawton Instrumental Activities of Daily Living Scale. Associations between informal and formal care utilization, socio-demographics, and clinical variables were assessed by descriptive statistics and Ordinary Least Squares models (OLS). Results Mean age for PwD was 81.8 years; 61% were female; 45.6% lived alone, and the mean MMSE score was 20.8 (SD ± 3.7). PwD with co-residents (44%) were younger (78.4 years) than those who were living alone (84.5 years; P < 0.001). During the first 2 months of lockdown, PwD missed on average 20.5 h of formal care in a month (P < 0.001) leading to an approximately 100% increase in informal care, which was particularly pronounced in personal hygiene (6.9 vs. 11.4 days in a month, P < 0.001) and supervision (9.2 vs. 17.6 days in a month; P < 0.001). Visiting caregivers increased by 1.9 days (SD ± 11.5), but co-residing caregivers increased their number of days providing ADL by approximately 7 days per month (β = 6.9; CI, 0.39–13.1, P < 0.05) after adjusting for PwD and caregiver demographics and clinical variables. Decrease in home nursing care was particularly visible for PwD living alone (− 6.1 vs. -1.3 h per month, P = 0.005). Higher cognitive function (β = − 0.64, CI, − 1.26 – 0.02, P = 0.044) was associated with reduction in home nursing service during the lockdown. Conclusion The care situation for PwD changed dramatically in the early phase of the COVID-19 pandemic, especially for those living alone who received less support from homecare services and visiting caregivers. For future crises and the forthcoming post-pandemic period, health authorities must plan better and identify and prioritize those in greatest need. Trial registration ClinicalTrials.gov; NCT04043364.

Does the amount of formal care affect informal care? Evidence among over-60s in France

This paper investigates the causal effect of the amount of formal care used on the informal care received by formal care users. We use an original instrument for formal care volume based on local disparities (NUTS 3 level, 96 units) in the price of formal care. Using the French CARE survey, we use a two-part model to assess the effect of formal care on the extensive and the intensive margin of informal care. An increase in the amount of formal care is found to be associated with a small decrease in the probability of using informal care. Heterogeneity tests show that this negative effect is mainly driven by help for daily activities provided by women. At the intensive margin, informal care is not significantly affected by the amount of formal care. Reforms increasing subsidies for formal care can thus be suspected to have a limited effect on informal care arrangements.

Literature Review on Policies to Support Early Childhood Development

The purpose of this report is to provide an overview of what we know as scientists about the developmental dimensions in early childhood that are particularly predictive of academic achievement and future well-being, the effect of formal child care on development and the barriers to access, and the interventions that can be made with parents to support their development, always with particular attention to the impacts on inequalities of outcomes. It consists of 4 chapters, each of which is the result of a systematic review of the literature. The first chapter will provide a conceptual map of the different dimensions that appear in the literature as particularly important for child development. These dimensions will then serve as a methodological grid for two of the other three chapters, which will systematically refer to them. The second chapter will focus on the effects of formal childcare arrangements on children's development. The third chapter will discuss the barriers to accessing these different forms of formal care, as well as the interventions that can be made to overcome these barriers. Finally, the last chapter will focus on the primary mode of care for children, namely their families. This will be a review of interventions that improve their child's development in each of the key dimensions identified in the first chapter.

Verandering in de intensiteit van mantelzorg tijdens de eerste COVID-19 lockdown in 2020 in Nederland

Changes in informal care provision during the first COVID-19 lockdown in 2020 in the Netherlands This study investigates to what extent the intensity of informal care provision has changed during the first lockdown due to the COVID-19 pandemic in the spring of 2020 in the Netherlands, whether these changes differed by the living situation of the care recipient, and whether these changes were associated with changes in indicators for ‘being able to’, ‘have to’ and ‘want to’ provide care (determinants of the Informal Care Model). We collected data in July 2020 among informal caregivers aged 78 and younger who indicated to provide care in March 2020 in the LISS-panel (N = 1,270 care situation of 1,014 caregivers). We found that, on average, informal care provision was reduced during the lockdown; caregivers of care recipients living in care institutions were the most likely to reduce or stop caregiving, and caregivers who helped someone in their own household were most likely to have increased their intensity. Feeling less restricted by the corona measures reduced the likelihood to stop or lower care provision and increased the likelihood of increasing care; being confronted with a reduction of formal care for the care recipient was related to a higher likelihood of increasing care; and stronger concerns about the care recipient increased the likelihood of intensifying care and prevented from stopping or reducing care. We conclude that the COVID-19 measures significantly impacted the amount of informal care provision and that the Informal Care Model provides a useful basis for explaining changes in informal care intensity.