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 (LIVE@Home.Path). 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. TRIAL REGISTRATION NUMBER: NCT04043364; Results.

LIVE@Home.Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial.

BACKGROUND: The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. METHODS: The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. DISCUSSION: We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04043364. Registered on 15 March 2019.