Less is more: The impact of deprescribing psychotropic drugs on behavioral and psychological symptoms and daily functioning in nursing home patients. Results from the Cluster-Randomized Controlled COSMOS Trial

Objective: To investigate the impact of medication reviews using collegial mentoring and systematic clinical evaluation on psychotropic prescriptions, behavioral and psychological symptoms of dementia (BPSD), and activities of daily living (ADL). Design: Four-month multicenter, multicomponent, cluster-randomized, single-blinded controlled trial. Setting: Thirty-three Norwegian nursing homes including 67 nursing home wards (clusters). Participants: A total of 723 enrolled patients, of which 428 participated in the study; 217 were randomized to the intervention and 211 to care as usual (control). Intervention: The COSMOS intervention consisted of Communication, Systematic pain management, Medication reviews, Organization of activities, and Safety. During medication review, the nursing home physician evaluated treatment with colleagues systematically using the results from validated clinical assessments. Measurements: Mean changes from baseline to month 4 in the number of prescribed psychotropic drugs (antipsychotics, anxiolytics, hypnotics or sedatives, antidepressants, and antidementia drugs); Neuropsychiatric Inventory Nursing Home Version (NPI-NH) and Cornell Scale of Depression in Dementia (CSDD); Lawton and Brody's Physical Self Maintenance Scale (PSMS). Results: Compared to control, the mean change in prescribed psychotropic drugs was reduced both in total and regular number, while mean changes in NPI-NH and CSDD scores did not differ between the groups. Mean change in PSMS showed improvement in the intervention group, and deterioration in the control group. Conclusion: Medication reviews using collegial mentoring and systematic clinical evaluation led to safe deprescribing, as the reductions in psychotropic drug use did not negatively affect BPSD, while ADL improved.publishedVersio

Impact of COVID-19 restrictions on behavioural and psychological symptoms in home-dwelling people with dementia: A prospective cohort study (PAN.DEM)

Objectives To investigate the impact of the COVID-19 restrictions on behavioural and psychological symptoms of dementia (BPSD). Design Prospective cohort study (PAN.DEM) nested within the halted parent trial ([email protected]). Setting Households in Norway immediate before and 6–9 weeks into the COVID-19 restrictions. Participants 104 dyads (persons with mild to moderate dementia aged ≥65 and their informal carers) completed both prepandemic and pandemic assessments, among 237 in the parent trial. Mini-Mental Status Examination score 15–26 or Functional Assessment Staging score 3–7 covered dementia severity. Main outcome measures Neuropsychiatric Inventory (NPI-12) total (range 0–144), psychosis (range 0–24), hyperactive behaviour (range 0–60) and mood subsyndrome (range 0–48) scores; Cornell Scale for Depression in Dementia (CSDD) total score (range 0–38). Results We found an overall increase in BPSD by NPI-12 total score comparing prepandemic to pandemic levels (median 16 IQR (4.5–29) to 20 (7–32.5), p=0.03) over a mean of 86 days (SD 19). NPI-12 total score worsened in 57 (55%) of people with dementia and was associated with postponed or averted contacts with healthcare professionals (logistic regression, OR 3.96, 95% CI 1.05 to 14.95). Psychosis subsyndrome levels increased (0 (0–3) to 0.5 (0–6), p=0.01) in 37 (36%) persons; this worsening was associated with partial insight (9.57, 1.14 to 80.71) and reduced informal carer contact (4.45, 1.01 to 19.71). Moreover, depressive symptoms increased as assessed by CSDD total score (5 (3–9) to 7 (4–12), p=0.01) and worsened for 56 (54%), which was inversely associated with psychotropic drugs on-demand (0.16, 0.03 to 0.75). Conclusions BPSD worsened during the first months of the COVID-19 restrictions, most pronounced for psychosis and depression. These BPSD exacerbations have implications for pandemic policies, emphasising that restrictions must balance COVID-19 morbidity and mortality against dementia deterioration.publishedVersio

Behavioral and Psychological Symptoms of Dementia : The impact of medication reviews in multicomponent interventions and the consequences of the Covid-19 restrictions

Bakgrunn: Adferdsmessige og psykologiske symptomer ved demens (APSD) er vanlige, kan være krevende å behandle og er forbundet med raskere sykdomsprogresjon og tidligere innleggelse i sykehjem. Det er behov for mer kunnskap om behandling og håndtering av APSD i ulike deler av helsetjenesten. Formål: Å undersøke om APSD blir påvirket av medikamentgjennomgang som ledd i multikomponente intervensjoner og Covid-19-restriksjonene. Materiale og metoder: APSD ble undersøkt ved hjelp av Nevropsykiatrisk Intervjuguide og Cornell Skala for Depresjon ved Demens i to studier i norsk kommunehelsetjeneste. Foreskrivning av psykofarmaka (antipsykotika, anxiolytika, sedativa og hypnotika, antidepressiva og legemidler mot demens) ble evaluert ved legemiddelgjennomgang. Med kollegial støtte gjennomførte sykehjemsleger standardiserte medikamentgjennomganger i KOSMOS, en klyngerandomisert studie a fire måneders varighet utført i 33 sykehjem (2014-2015). Fastleger gjennomførte medikamentgjennomgang for sine hjemmeboende pasienter med demens i [email protected], en klyngerandomisert studie med stegvis implementering av en multikomponent intervensjon a seks måneders varighet i tre kommuner (2019-2021). I PAN.DEM ble APSD sammenlignet før og under Covid-19-restriksjonene i 2020, da omfattende smittevernstiltak ble iverksatt for å bekjempe koronavirusutbruddet. Resultater: APSD ble forverret blant hjemmeboende personer med demens da de ikke fikk omsorg og tjenester som vanlig i Covid-19-pandemiens første fase. APSD ble ikke påvirket av medikamentgjennomgang i de multikomponente intervensjonene i sykehjem og allmennpraksis sammenlignet med kontrollgruppene som mottok vanlig omsorg. Størst reduksjon i bruk av psykofarmaka ble funnet blant dem som ved studiestart brukte flere medikamenter. Sykehjemspasienter brukte psykofarmaka oftere enn hjemmeboende personer med demens. Konklusjon: Denne avhandlingen viser at ordinære tjenester i kommunal demensomsorg er viktig ettersom personer med demens opplevde symptomforverring under Covid-19-restriksjonene, mens medikamentgjennomgang som del av multikomponente intervensjoner ikke påvirket APSD.Background: Behavioral and psychological symptoms of dementia (BPSD) are prevalent, often challenging to treat, and associated with earlier functional decline and admission to nursing homes. There is a need for evidence-based strategies to improve BPSD management in different care settings. Aim: To prospectively investigate the impact of medication reviews in multicomponent interventions and the impact of the Covid-19 restrictions on BPSD. Materials and methods: BPSD were assessed by the Neuropsychiatric Inventory and Cornell Scale for Depression in Dementia in two trials in Norwegian municipal dementia care. Psychotropic drug use (antipsychotics, anxiolytics, hypnotics/sedatives, antidepressants, and antidementia drugs) was evaluated in medication reviews. Medication reviews were conducted in nursing homes using collegial mentoring and systematic clinical evaluation in COSMOS, a four-month multicenter, multicomponent cluster-randomized controlled trial (2014-2015). General practitioners conducted medication reviews for home-dwelling people with dementia in [email protected], a stepped-wedge, closed-cohort, multicomponent cluster-randomized controlled trial (2019-2021). PAN.DEM was a prospective cohort study comparing BPSD in home-dwelling people with dementia before and during the Covid-19 restrictions when ‘non-essential’ healthcare services were withdrawn (2020). Results: We found that BPSD deteriorated for home-dwelling people with dementia during the initial Covid-19 restrictions, while BPSD were not impacted by medication reviews in the multicomponent intervention conducted in nursing homes and general practice. The greatest reductions in psychotropic drugs were found among those who received several at baseline, and nursing home patients were prescribed psychotropic drugs more widely than home-dwelling people. Conclusions and consequences: As BPSD were impacted by the withdrawal of ‘care as usual’ and not by medication reviews as part of add-on multicomponent interventions, this thesis highlights the importance of established services in dementia care for managing BPSD.Doktorgradsavhandlin

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 [email protected], 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.publishedVersio

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

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

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.publishedVersio

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