Resource utilisation, costs and clinical outcomes in non-institutionalised patients with Alzheimer’s disease: 18-month UK results from the GERAS observational study

Abstract

BackgroundAlzheimer’s disease (AD), the commonest cause of dementia, represents a significant cost to UK society. This analysis describes resource utilisation, costs and clinical outcomes in non-institutionalised patients with AD in the UK.MethodsThe GERAS prospective observational study assessed societal costs associated with AD for patients and caregivers over 18 months, stratified according to baseline disease severity (mild, moderate, or moderately severe/severe [MS/S]). All patients enrolled had an informal caregiver willing to participate in the study. Healthcare resource utilisation was measured using the Resource Utilization in Dementia instrument, and 18-month costs estimated by applying unit costs of services and products (2010 values). Total societal costs were calculated using an opportunity cost approach.ResultsOverall, 526 patients (200 mild, 180 moderate and 146 MS/S at baseline) were recruited from 24 UK centres. Mini-Mental State Examination (MMSE) scores deteriorated most markedly in the MS/S patient group, with declines of 3.6 points in the mild group, 3.5 points in the moderate group and 4.7 points in the MS/S group; between-group differences did not reach statistical significance. Patients with MS/S AD dementia at baseline were more likely to be institutionalised (Kaplan–Meier probability 28% versus 9% in patients with mild AD dementia; p < 0.001 for difference across all severities) and had a greater probability of death (Kaplan–Meier probability 15% versus 5%; p = 0.013) at 18 months. Greater disease severity at baseline was also associated with concomitant increases in caregiver time and mean total societal costs. Total societal costs of £43,560 over 18 months were estimated for the MS/S group, versus £25,865 for the mild group and £30,905 for the moderate group (p < 0.001). Of these costs, over 50% were related to informal caregiver costs at each AD dementia severity level.ConclusionsThis study demonstrated a mean deterioration in MMSE score over 18 months in patients with AD. It also showed that AD is a costly disease, with costs increasing with disease severity, even when managed in the community: informal caregiver costs represented the main contributor to societal costs.

Tip of the Iceberg: Assessing the Global Socioeconomic Costs of Alzheimer’s Disease and Related Dementias and Strategic Implications for Stakeholders

“…Several longitudinal studies have shown that the direct patient costs of AD increase over time or with disease severity [24,25,27,46] and are higher in nursing home residents, compared to communitydwelling patients [26,47]. In community-dwelling patients, the main driver appears to be patient social care costs [24,25], while direct medical costs for patients and for caregivers do not differ according to ADRD severity [24,25,46].…”

“…While this is less of a challenge for employed caregivers, where the alternative is paid work, the valuation of time spent by unemployed or retired caregivers is not straightforward and different strategies have been adopted. For example, several studies segregate informal caregivers by employment status, and have reduced the opportunity cost of time for unemployed or retired caregivers to about 25-35% of average labor force wages, commonly referred to as the value of 'leisure time' [23][24][25]58]. In another study, unpaid 'leisure time' in retired carers was valued based on average pension rates [60].…”

“…Measures of caregiver 'burden' evaluate the tasks required to provide caregiving (objective burden) and the caregiver's perception on the degree to which caregiving has affected emotional, financial, physical and social functioning (subjective burden). The Zarit Burden Interview (ZBI) is one of the most commonly used scales to assess the subjective burden experienced by informal ADRD caregivers [24,26,74,91,99]. Similarly, the Caregiver Burden Inventory, among other instruments (e.g., Role Overload Scale, Caregiver Strain Index), have also been commonly used to measure the subjective and objective aspects of caregiver burden [29,30,56,100].…”

Use and costs of services and unpaid care for people with mild‐to‐moderate dementia: Baseline results from the IDEAL cohort study

“…Given that more men than women participants were recruited and that there were many spousal carers, it is unsurprising that more than two-thirds of carers were females, and this preponderance may have boosted overall unpaid care cost estimates. Numerous studies have reported similar proportions of female carers of people with dementia [8,40].…”

Dementia as a contemporary challenge for providing care for the aging populations

“…In Germany, this expenditure was respectively 1,312 €, 2,412 € and 3,722 €, while in the UK it was 1,621 €, 1,836 € and 2,784 €. [30,31]. In Spain, the GERAS II study showed that care for patients with mild dementia is 1,514 € per month, for patients with moderate dementia 2,082 € per month, and increases to 2,818 € in the third stage of the disease.…”