Costs and resource use of community-dwelling patients with Alzheimer’s disease in Japan: 18-month results from the GERAS-J study

Abstract

Objective: To determine the longitudinal societal costs and burden of community-dwelling patients with Alzheimer's disease (AD) and their caregivers in Japan.Methods: GERAS-J was an 18-month, prospective, longitudinal, observational study. Using the Mini-Mental State Examination (MMSE), patients routinely visiting memory clinics were stratified into groups based on AD severity at baseline (mild, moderate, and moderately severe/severe [MS/S]). Healthcare resource utilization and caregiver burden were assessed using the Resource Utilization in Dementia and Zarit "Caregiver" Burden Interview questionnaires, respectively. Total monthly societal costs were estimated using Japan-specific unit costs of services and products (patient direct healthcare use, patient social care use, and informal caregiving time).Results: Overall, 553 patients (156 mild; 209 moderate; 188 MS/S) were enrolled. MMSE scores declined (1.73, 1.38, and 0.95 points for the mild, moderate, and MS/S AD groups, respectively) and caregiver burden and resource utilization increased over 18 months in each of the AD severity groups. Cumulative total societal costs per patient over 18 months were 3.1, 3.8, and 5.3 million Japanese yen (29,006, 35,662, and 49,725 USD) for mild, moderate, and MS/S AD, respectively. Both patient social care costs and caregiver informal care costs increased with baseline disease severity, with >50% of total costs due to caregiver informal care in each disease severity subgroup. A c c e p t e d M a n u s c r i p tConclusions: Total treatment costs increased with AD severity over 18 months due to increases in both patient social care costs and caregiver informal care costs. Our data suggest current social care services in Japan are insufficient to alleviate the negative impact of AD on caregiver burden.

A Literature Review on the Burden of Alzheimer’s Disease on Care Partners

“…In total, 39 references met the inclusion criteria at full text review and were included for data extraction [90, 97-99, 105, 106, 109, 111, 114-144]. An additional 32 relevant studies published between 2021 and 2022 were identified in the supplementary targeted searches [104,.…”

“…Most studies reported a moderate to severe impact on care partner burden using the ZBI, CBI, or the Burden Index of Caregivers (BIC) [67,68,71,85,177,178]. Additionally, several longitudinal studies were identified showing that care partner burden is high even in mild to moderate AD, and that it increases with disease progression [79,104,153]. In a multinational study of 616 care partners of individuals with mild to moderate AD, the mean care partner burden, as measured by ZBI-22 score, was 26.0 (indicating a moderate burden) at baseline and, over the 18-month study period, there was a mean increase of 7.4 points [153].…”

“…In a multinational study of 616 care partners of individuals with mild to moderate AD, the mean care partner burden, as measured by ZBI-22 score, was 26.0 (indicating a moderate burden) at baseline and, over the 18-month study period, there was a mean increase of 7.4 points [153]. In 69 care partners of individuals with AD in Italy, there was a significant increase in burden as assessed by the CBI after 1 year (mean [standard deviation (SD)] score: 28.9 [18.2] at baseline and 38.7 [14.5] at year 1; p < 0.05) [79], and in a Japanese study (N = 553), mean care partner ZBI-22 scores significantly increased over 18 months in each of the three AD severity subgroups (mean [95% confidence interval (CI)] scores at baseline and 18 months: 27.2 [24.7-29.8] and 28.5 [25.7-31.3], p = 0.045 for mild AD; 27.2 [25.1-29.3] and 28.7 [26.3-31.1], p = 0.002 for moderate AD; and 33.6 [31.4-35.7] and 34.7 [32.0-37.5], p = 0.022 for moderately severe/severe AD) [104].…”

“…The GERAS study reported that estimated mean monthly care partners' informal costs in Euros differed significantly between groups when caring for individuals with mild, moderate, and moderately severe/severe AD (p < 0.001 in each of France, Germany, and the UK): 677, 804, and 1,307 in France; 643, 1,329, and 2,376 in Germany; and 964, 1,135, and 1,730 in the UK, respectively (Table 4) [111]. Seven studies across seven countries reported that care partners' cost burden increased with the increasing severity of AD in those they cared for (France, Germany, Italy, Japan, Spain, Thailand, and the UK; see Table 4) [104,105,111,117,125,129,131].…”

Effect of Psychoeducational Intervention on Donepezil Retention Rate and Analysis of Reasons for the Discontinuation in Patients with Alzheimer’s Dementia: A Randomized Study

“…9 As a collateral benefit, previous observational studies showed that patients with AD who were administered cholinesterase inhibitors, such as donepezil, showed a lower risk of constipation, bladder overactivity, 10 and myocardial infarction 11 than nonusers. In Japan, since a greater proportion of the social cost of dementia is derived from informal care 12 and the total societal costs and the proportion of informal care costs incurred by caregivers increase with the severity of AD in patients, 13 it is important to continue medical treatment with the optimal medication to reduce the cost of additional medical care and burden on patients, families, and caregivers.…”