The impact of informal and formal care disruption on older adults' psychological distress during the COVID-19 pandemic in UK.

This paper investigates how formal and informal caregiving disruptions-due to the U.K. government's non-pharmaceutical interventions (NPIs) aimed at reducing transmission of the SARS-CoV-2 virus-may have affected the likelihood of psychological distress among older individuals. We model the association between disruption of formal and informal care and mental health of the elderly during the first wave of the COVID-19 pandemic using a recursive simultaneous - equation model for binary variables. Our findings reveal that public interventions, which are most essential for reducing the pandemic spread, influenced the provision of formal and informal care. The lack of adequate long-term care following the COVID-19 outbreak has also had negative repercussions on the psychological well-being of these adults.

How Do Shifts in Patients with Mental Health Problems' Formal and Informal Care Utilization Affect Informal Caregivers?: A COVID-19 Case Study.

(1) Background: This study investigated how potential shifts in patients' formal and informal care utilization during the COVID-19 pandemic impacted their informal caregivers in terms of their subjective burden, psychological wellbeing, and happiness. (2) Methods: A retrospective cohort study design was employed for a panel of Dutch informal caregivers of persons with mental health problems (n = 219) in June 2020. Descriptive statistics and differences between means were determined for the patients' informal and care utilization and informal caregivers' subjective burden, happiness, and psychological wellbeing. Three mediation analyses were conducted using the PROCESS macro. (3) Results: Informal caregivers reported significantly worse happiness and subjective burden scores during the COVID-19 pandemic compared with before the lockdown. There were minimal shifts in patient's care utilization reported, with the exception of a decrease in significant emotional and practical support provided by the informal caregiver. In the mediation analyses, there was not a significant indirect effect of shifts in patients' formal care utilization on informal caregivers' subjective burden, psychological wellbeing, and happiness through shifts in patients' informal care utilization. (4) Discussion and conclusion: Whilst we found that shifts in patients' care utilization during the first wave of the pandemic did not affect the informal caregiver in the short term, it is unclear what the long-term impact of the pandemic might be on informal caregivers. More research should be conducted to understand the implications of short- and long-term impact of substitution on informal caregivers of persons with mental health problems, with special consideration of the COVID-19 context and uptake of e-health technology.

Factors Worsening and Mitigating the Consequences of the COVID-19 Outbreak on the Overall Health of Informal Caregivers of Older People with Long-Term Care Needs Living in Germany and in Italy.

Population ageing and the higher prevalence of multimorbidity in later life are increasing the demand for Long-Term Care (LTC) worldwide; this has been exacerbated by the COVID-19 pandemic. As in Europe and beyond, the bulk of care for frail older people is carried out by informal caregivers. This study aimed at understanding the factors affecting the overall worsening health of informal caregivers of older people with LTC needs living in Germany and Italy during the outbreak. To this purpose, 319 informal caregivers (149 in Germany and 173 in Italy) were surveyed online in 2020-2021. A logistic regression analysis was performed by country, to obtain an adjusted estimate of the risk of worsening of caregivers' health. This risk increased by 42% for German caregivers compared to Italian ones, despite the former receiving more formal services. This may depend on different quality standards of LTC services and caregivers' expectations, and on differing policies concerning migrant care workers (MCWs) during the outbreak, who could not enter Germany and were "trapped" at care recipients' homes in Italy. Results call for in-home care reforms and policies guaranteeing more effective caregiver support, home care services and fairer working condition for MCWs in both countries.

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 LIVE@Home.Path 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 (ß = 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 (ß = - 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 .

"We Are Saving Their Bodies and Destroying Their Souls.": Family Caregivers' Experiences of Formal Care Setting Visitation Restrictions during the COVID-19 Pandemic.

This study aims to explore the experiences of family caregivers during the COVID-19 pandemic-imposed visitation restrictions at formal care settings (FCS) such as assisted living centers and traditional nursing homes. Participants (N = 512) were recruited from an international caregiving social media site that was developed at the beginning of the COVID-19 pandemic. Descriptive data was collected on the family caregivers, the care recipient and facility. Respondents also provided a single feeling word describing their experience and an open-ended question allowed for further exploration. Caregivers were predominantly daughters (n = 375). The most common reported feeling words were sadness (n = 200), trauma (n = 108), anger (n = 65), frustration (n = 56), helplessness (n = 50), and anxiety (n = 36). Thematic analysis revealed four overarching themes: 1) isolation 2) rapid decline 3) inhumane care and 4) lack of oversight. This study highlights the importance of addressing the mental, emotional and physical needs of both care recipient and family caregiver during this challenging time. Caregiver visitation policy reform that includes the care recipient and family caregiver is also discussed.

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study.

BACKGROUND: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. METHODS: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. RESULTS: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. CONCLUSIONS: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.