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

Abstract

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 (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.

In the Eye of the Storm: A Quantitative and Qualitative Account of the Impact of the COVID-19 Pandemic on Dutch Home Healthcare

“…Research among informal caregivers of patients with dementia living at home in Norway, for example, also showed that almost 70% of relatives reported an increase in their care responsibilities [ 4 ]. The major staff shortages within HHC [ 17 ]—which were exacerbated further by the COVID-19 pandemic due to people’s fear of infection [ 3 ] and high rates of sick leave [ 18 ]—underline the importance of shifting services from HHC professionals to informal caregivers or encouraging clients to become more independent. However, the increase in the intensity of informal care provision also resulted in a higher burden for informal caregivers.…”

The impact of medication reviews by general practitioners on psychotropic drug use and behavioral and psychological symptoms in home-dwelling people with dementia: results from the multicomponent cluster randomized controlled LIVE@Home.Path trial

“…We met COVID-19 related limitations in conducting this study. Due to the dramatically worsening care situation resulting in exacerbating BPSD and impinged trial protocol [ 23 , 53 , 54 ], we found it appropriate to solely analyze the prepandemic data from the first 6-month period despite compromising power and misbalancing group sizes (Fig. 1 ).…”

Abusive episodes among home-dwelling persons with dementia and their informal caregivers: a cross-sectional Norwegian study

“…According to a national ICG survey in Norway, spouses/partners are among those who spend most hours on caregiving, and the perceived caregiver burden is associated with the extent of caregiving tasks [42]. During the COVID-19 pandemic, there was an increase in informal care, especially among ICGs who co-resided with the person with dementia [20]. There is also evidence that BPSD increased during the pandemic [21].…”

“…Because of the lockdown, many services for persons with dementia were reduced or canceled. A study from the first two months of lockdown in Norway found that formal care provided for persons with dementia on average decreased by 20.5 h per month, while informal care almost doubled [20]. Both the decrease in formal care and the increase in informal care were more pronounced when the ICG co-resided with the person with dementia.…”