Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial.

OBJECTIVES: To investigate the association between clinical, demographic, and organizational factors and formal (health professionals) and informal (relatives) resource utilization in nursing home patients with and without dementia. METHODS: Baseline data from the multicomponent cluster randomized control COSMOS trial including 33 Norwegian nursing homes and 723 residents with and without dementia. Nursing home staff (n = 117) participated as proxy raters to approximate formal and informal resource use in daily care. MEASUREMENTS: The primary outcome was the Resource Utilization in Dementia - Formal Care scale to assess formal and informal care time in hours/month regarding basic activities of daily living (ADL), instrumental ADL, and supervision. Secondary outcomes were hours/week spent on formal and informal leisure activities. Behavioral and psychological symptoms in dementia (BPSD) were assessed by the Neuropsychiatric Inventory-Nursing Home version, physical function by the Physical Self-Maintenance Scale, and psychotropic drug use by the Anatomical Therapeutic Chemical classification system. Organizational factors were ward size and staff ratio. RESULTS: Generalized linear mixed-effect models and two-part modelling revealed an association between increased formal care time and poorer physical function, higher agitation and psychotropic drug use and lower cognitive function (all p < .05). Enhanced formal leisure time was related to better ADL function (p < .05) and smaller wards (p < .05). The family related leisure time was associated with agitation, decline in ADL function, smaller wards, and better staffing ratio (all p < .05). Married patients received more informal direct care (p < .05) and leisure time (p < .05) compared to unmarried/widowed. CONCLUSION: For nursing home staff, higher agitation and psychotropic drug use, and lower cognitive function, is associated with more direct care time, whereas leisure time activities are less prioritized in people with lower physical function. Informal caregivers' engagement is encouraged by smaller nursing homes and better staff ratio. Therefore, we recommend stakeholders and healthcare professionals to consider these clinical and organizational factors to optimize treatment and leisure time activities in nursing home patients with various needs. TRIAL REGISTRATION: ClinicalTrials.gov ; NCT02238652.

Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD).

BACKGROUND: Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40-75% of the total dementia cost exceeding formal care time and medical costs. OBJECTIVE: To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving. METHODS: The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies. RESULTS: Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs. CONCLUSION: The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups. PROSPERO REGISTRATION: CRD42021226388 .

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 .

Access to and interest in assistive technology for home-dwelling people with dementia during the COVID-19 pandemic (PAN.DEM).

The COVID-19 restrictions affect daily living in Norway, including home-dwelling people with dementia, and researchers conducting clinical trials in dementia care. In this paper, we 1) describe the development of a pandemic cohort (PAN.DEM) incorporated in the LIVE@Home.Path, an ongoing clinical intervention trial on resource utilisation including home-dwelling people with dementia and their caregivers (N = 438 dyads), 2) describe pre-pandemic use of assistive technology and 3) explore the extent to which COVID-19 restrictions increase caregivers interest in innovation in the PAN.DEM cohort (N = 126). Our main finding is that assistive technology is available to 71% pre-pandemic; the vast majority utilise traditional stove guards and safety alarms, only a few operate sensor technology, including GPS, fall detectors or communication aids. In response to COVID-19, 17% show increased interest in technology; being less familiar with operating a telephone and having higher cognitive functioning are both associated with increased interest. We conclude that wearable and sensor technology has not yet been fully implemented among people with dementia in Norway, and few caregivers show increased interest under the restrictions. Clinicaltrials.gov (NCT0404336).

How, Why and Where it Hurts-Breaking Down Pain Syndrome Among Nursing Home Patients With Dementia: A Cross-Sectional Analysis of the COSMOS Trial.

BACKGROUND: Between 40%-60% of nursing home patients with dementia suffer from chronic and acute pain despite increasing their analgesic drug prescription. AIMS: Determine the locations and intensity of pain and the association between quality of life (QoL) and four stratified pain-analgesic groups: (1) pain-analgesics treatment; (2) pain-no analgesics; (3) no pain-analgesics treatment; and (4) no pain-no analgesics. DESIGN: Multicenter, multicomponent cluster randomized controlled Communication, Systematic assessment and treatment of pain, Medication review, Occupational therapy, and Safety - an effectiveness (COSMOS) trial. PARTICIPANTS: At baseline, 723 nursing home patients were enrolled; 463 were completely evaluated for the presence of pain and included in the cross-sectional analyses. METHODS: Data were collected using the following tests: Cognitive function (Mini-Mental-State Evaluation [MMSE]); Quality of Life in Late stage of Dementia (QUALID); Dementia-Specific QoL (QUALIDEM); Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (MOBID-2); and number of analgesic drug prescriptions. Analysis of covariance (ANCOVA) was used to compare pain and QoL across pain-analgesics groups. RESULTS: The majority of participants (78%) had moderate-to-severe dementia, were female (74%), and a mean age of 86.7 years. Almost 44% reported clinically significant pain, whereas 69% had ≥2 pain locations, especially in the musculoskeletal system. Some 33.5% of participants had pain receiving analgesics, 10% had pain with no analgesics, and 27% had no pain receiving analgesics. Patients evaluated with clinically significant pain intensity scores had lower QoL (<.001) compared with assessments relying on different pain locations. CONCLUSION: Untreated musculoskeletal and multi-located pain is still common in nursing home patients with dementia. A significant share without pain receive analgesics. Proper pain assessment and regular re-assessment are prerequisites for the prescribing and deprescribing of analgesics. Pain intensity scores are more significantly connected to QoL. This must be stressed when evaluating pain and QoL.