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.