key: cord-0700157-bhgt45f5 authors: Jones, Aaron; Maclagan, Laura C.; Schumacher, Connie; Wang, Xuesong; Jaakkimainen, R. Liisa; Guan, Jun; Swartz, Richard H.; Bronskill, Susan E. title: Impact of the COVID-19 pandemic on home care services among community-dwelling adults with dementia date: 2021-09-06 journal: J Am Med Dir Assoc DOI: 10.1016/j.jamda.2021.08.031 sha: 55aa96a283f49c6878e19fdf744c7298f4b45850 doc_id: 700157 cord_uid: bhgt45f5 Objective To examine how the COVID-19 pandemic impacted use of home care services for individuals with dementia across service types and sociodemographic strata. Design Population-based time series analysis Setting and Participants Community-dwelling adults with dementia in Ontario, Canada from January 2019 to September 2020 Methods We used health administrative databases (Ontario Registered Persons Database and Home Care Database) to measure home care services used by participants. Possion regression models were fit to compare weekly rates of home care services during the pandemic to historical trends with rate ratios (RR) and 95% confidence intervals (CI) stratified by service type (Nursing, personal care, therapy), sex, rurality, and neighbourhood income quintile. Results During the first wave of the pandemic, personal care fell by 16% compared to historical levels (RR 0.84, 95% CI (0.84,0.85)) and therapies fell by 50% (RR 0.50, 95% CI (0.48, 0.52)), while nursing did not significantly decline (RR 1.02, 95% CI (1.00, 1.04)). All rates had recovered by September 2020, with nursing and therapies higher than historical levels. Changes in services were largely consistent across sociodemographic strata, although the rural population experienced a larger decline in personal care and smaller rebound in nursing. Conclusions and Implications Personal care and therapies for individuals with dementia were interrupted during the early months of the pandemic, while nursing was only minimally impacted. Pandemic responses with the potential to disrupt home care for individuals living with dementia must balance the impacts on individuals with dementia, caregivers, and providers. The COVID-19 pandemic disrupted health service delivery across health systems, particularly 30 during the first months of local community transmission 1 . Significant drops in the volume of ambulatory 31 care occurred as services were cancelled, delayed, or shifted to virtual settings to reduce the risk of 32 COVID-19 transmission 2,3 . While some North American studies have shown that a number of the services 33 that fell in the Spring of 2020 had recovered by late Summer and early Fall, the recoveries were not 34 necessarily equivalent across demographic and geographic groups. 4,5 35 The disruption of health services can be particularly challenging for people living with dementia in 36 the community, many of whom receive essential care from a variety of health care providers 6 . Individuals 37 with dementia in Ontario access a variety of different publicly-provided home care services, including 38 personal care, nursing, and various professional services such as physiotherapy and occupational therapy 7 . 39 Differences in the typical urgency of these services may have led to them being differentially affected by 40 the pandemic. In addition, given evidence that the pandemic is exacerbating existing inequalities 8,9 , it is 41 important to examine whether the impact of the pandemic was distributed equally across 42 sociodemographic dimensions. 43 J o u r n a l P r e -p r o o f Impact of COVID-19 on home care services 3 The objective of this study was to investigate the how rates of home care services provided to 44 community-dwelling adults living with dementia changed during the initial phases of the COVID-19 45 pandemic. Specifically, we examined rates of use across service types of personal care, nursing, and 46 therapies, and additionally examined whether the changes in rates were equivalent across strata defined 47 by rurality, sex, and neighbourhood income. 48 We performed a population-based time series analysis of home care service use among 51 community-dwelling adults with dementia in Ontario, Canada. Ontario is Canada's most populous 52 province with a population of nearly 15 million individuals. 53 Population-based health administrative databases were linked using unique encoded identifiers 55 and analyzed at (blinded). Databases used include the Ontario Registered Persons Database, used to 56 identify participant demographics, and the Home Care Database, used to identify publicly-funded home 57 care services. The use of data in this project is authorized under section 45 of Ontario's Personal Health 58 Information Protection Act and does not require review by a Research Ethics Board. 59 We included all community-dwelling adults with dementia in Ontario aged 40 years and older who 61 were eligible for Ontario's publicly-funded health insurance at the start of each week between January 62 and September of 2019 (historical period) and 2020 (pandemic period). Individuals with dementia were 63 identified using a validated health data administrative algorithm 10 . Eligibility was determined on a week-64 by-week basis, meaning that the participants were not a fixed cohort but could vary over time. 65 J o u r n a l P r e -p r o o f Impact of COVID-19 on home care services therapy, speech language therapy, nutritional therapy, and social work). Rates of weekly home care visits 68 were calculated across three strata: sex, rurality (rural/urban), and neighbourhood income quintile (Q1-69 lowest, Q5-highest). Rurality was defined by the Rurality Index of Ontario 11 , with values higher than 40 70 considered rural, and neighbourhood income quintile was defined using Statistics Canada census data 12 . 71 Sex, rurality, and income quintile were chosen as strata as they have been previously tied to inequities in 72 access to care that could be exacerbated by the pandemic 13,14 . 73 We plotted the weekly rate of home care visits per 100 individuals, stratified by service type, sex, 75 rurality, and neighbourhood income quintile during both time periods. We used Poisson regression 76 models with year as the sole independent variable to calculate rate ratios (RR) and 95% confidence 77 intervals (CI) for each weekly rate in the pandemic period (2020) compared to the corresponding historical 78 week (2019). Models were run overall and stratified by the selected sociodemographic variables. We 79 reported RRs for the week with the lowest home care service rate in 2020 per strata, as well as the latest 80 week in the analysis (end of September). Analysis were performed with SAS, version 9.4 (SAS Institute, 81 Inc., Cary, NC). 82 The trend for nursing visits appeared to dip slightly at the start of the pandemic but the lowest 104 weekly rate in April 2020 was similar to that in 2019 (RR 1.02 (1.00, 1.04) ). By the end of the September 105 2020 the rate of nursing visits was 14% higher than 2019 (RR 1.14 (1.11, 1.16). However, the rural 106 population did not experience an increase in nursing visits in 2020 vs 2019 (RR 0.99, 95% CI (0.92, 1.07)). (Table S1) . 111 Public home care services provided to community-dwelling adults living with dementia were 113 interrupted during the first few months of the COVID-19 pandemic (March and April 2020) but recovered 114 through the summer months and regained or exceeded historical levels by the end of the September 115 2020. The degree of disruption varied by service type with nursing declining only slightly, personal care 116 declining by a moderate degree, and therapies declining by a larger degree. The disruptions were largely 117 similar across strata defined by rurality, sex, and neighbourhood income quintile, though individuals in 118 rural areas experienced a larger decline in personal care and smaller rebound in nursing, and individuals in 119 the highest income quintile experienced a larger initial decline in personal care. 120 Home care services are a critical component of the support system for adults with dementia in the 121 community. Across Canada, home care services were restricted or reduced during the early months of the 122 pandemic, particularly if they were deemed less essential 19 . Home nursing in particular provides 123 necessary care that would otherwise need to received in other ambulatory care settings. Thus nursing 124 may have been considered more essential than personal care or therapies based on provincial guidelines 125 that prioritized reducing direct impacts on safety and minimizing harms 20 , explaining the differences we 126 observed in our study. Services may also have been cancelled directly by home care recipients or their 127 caregivers over concerns regarding risk of COVID transmission 21 . In addition, early in the pandemic, home 128 care workers faced unsafe working conditions due to lack of personal protective equipment and infection 129 control guidance which may have also led to cancellation of service 22,23 . 130 Regardless of the cause, any interruption to home care places additional burden on individuals 131 with dementia and their caregivers. Personal care services assist an individual in the activities such as 132 dressing, toileting, transferring, and if not provided by a home care worker would need to be provided by 133 an unpaid caregiver. Increasing caregiver burden has been observed during the pandemic and linked to 134 rising rates of distress and burnout. 24,25 While it may not be considered as essential as nursing, the loss of 135 personal care can impact the safety of those needing care, increasing the risk of falls and injury. 136 Additionally, loss of services may increase social isolation, which has been linked to new and worsening 137 neuropsychiatric symptoms among individuals with dementia during the pandemic 26 . Any policy or 138 directive with the potential to disrupt home care services needs to consider the risks incurred by people 139 with dementia, caregivers, and home care workers, all of whom may face additional burden and/or risk. 140 While impact of the pandemic across sociodemographic strata was generally consistent, rural 141 areas experienced a greater decline in personal care and smaller rebound in nursing services. Residents in 142 the wealthiest areas also had a larger initial decrease in personal care, which may be related to having 143 additional options/resources to secure the necessary care. Equitable access to home care in rural areas 144 has been previously identified as a challenge and any policy or directive that would disrupt home care 145 services needs to ensure it will not exacerbate extant access issues 27 . Future research should further 146 examine the impact of the pandemic on individuals with dementia, including whether the interruption of 147 home care services resulted in a downstream increase in emergency department visits or hospital 148 admissions. 149 Our data sources capture all publicly-funded home care services in Ontario, but we do not have data on 151 home care that is paid for privately. Also, we do not have information on the specific reasons why home 152 care services were cancelled or delayed. Finally, our study did not include a comparison a group of older 153 adults without dementia. 154 J o u r n a l P r e -p r o o f COVID-19 on Canada's health care systems | CIHI Shifts in office and virtual primary care during the early COVID-167 19 pandemic in Ontario, Canada Changes in Health Services Use Among Commercially Insured 169 US Populations During the COVID-19 Pandemic The Impact Of The COVID-19 Pandemic On Hospital 171 Admissions In The United States. Health Aff Proj Hope Effects of the COVID-19 Pandemic on Outpatient Providers in the United States Trajectories of health system use and survival for 175 community-dwelling persons with dementia: a cohort study Evaluating access to health and care services during 179 lockdown by the COVID-19 survey in five UK national longitudinal studies COVID-19 exacerbating inequalities in the US Identification of Physician-Diagnosed Alzheimer's 184 Disease and Related Dementias in Population-Based Administrative Data: A Validation Study Using 185 Family Physicians' Electronic Medical Records Measuring Rurality -RIO2008_BASIC: Methodology and Results Statistics Canada. Postal Code Conversion File Plus (PCCF+) Version 6C, Reference Guide Sex differences in the management of 193 persons with dementia following a subnational primary care policy intervention Factors associated with not receiving homecare, end-of-life 196 homecare, or early homecare referral among cancer decedents: A population-based cohort study The association between home care visits and same-day 199 emergency department use: a case-crossover study Archived -COVID-19: Government service changes and public closures Ontario Orders the Mandatory Closure of All Non-Essential Workplaces to Fight Spread of COVID-19 Ontario Permits More Businesses and Services to Reopen in the Coming Days. news.ontario.ca Canada's multi-jurisdictional COVID-19 Public Health response 210 Chief Medical Officer of Health. Directive #2 for Health Care Providers (Regulated Health 212 Professionals or Persons who operate a Group Practice of Regulated Health Professionals) Decision-making for receiving paid home care for dementia in the 216 time of COVID-19: a qualitative study COVID-19 exposures and infection control among home care 218 agencies Experiences of Home Health Care Workers in New York City 220 During the Coronavirus Disease 2019 Pandemic: A Qualitative Analysis The sponsor played no role in the design, analysis, or interpretation of the study.