Impact of the Severity of Alzheimer’s Disease on the Quality of Life, Activities of Daily Living, and Caregiving Costs for Institutionalized Patients on Anti-Alzheimer Medications in Japan

Abstract

Background: Alzheimer’s disease (AD) increases societal costs and decreases the activities of daily living (ADL) and quality of life (QoL) of the affected individuals. Objective: We assess the impact of AD severity on ADL, QoL, and caregiving costs in Japanese facilities for the elderly. Methods: Patients with AD in facilities for the elderly were included (47 facilities, N = 3,461). The QoL, ADL, and disease severity of patients were assessed using Barthel Index (BI), EuroQoL-5D-5L (EQ-5D-5L), and Mini-Mental State Examination (MMSE), respectively. Annual caregiving costs were estimated using patients’ claims data. The patients were subcategorized into the following three groups according to the MMSE score: mild (21≤MMSE≤30), moderate (11≤MMSE≤20), and severe (0≤MMSE≤10). Changes among the three groups were evaluated using the Jonckheere-Terpstra test. Results: Four hundred and one participants were on anti-AD medicines, of whom 287 (age: 86.1±6.4 years, 76.7% women) in the mild (n = 53, 84.0±6.9 years, 71.7%), moderate (n = 118, 86.6±5.9 years, 76.3%), and severe (n = 116, 86.6±6.5 years, 79.3%) groups completed the study questionnaires. The mean BI and EQ-5D-5L scores for each group were 83.6, 65.1, and 32.8 and 0.801, 0.662, and 0.436, respectively. The mean annual caregiving costs were 2.111, 2.470, and 2.809 million JPY, respectively. As AD worsened, the BI and EQ-5D-5L scores decreased and annual caregiving costs increased significantly. Conclusion: AD severity has an impact on QoL, ADL, and caregiving costs.

Convergent validity of EQ-5D with core outcomes in dementia: a systematic review

“…Of the 30 studies included, they were predominantly from European countries ( n = 15) [ 19 – 33 ] and the UK ( n = 7) [ 34 – 40 ]. There were a total of 17 papers published since 2012 [ 20 , 22 , 23 , 25 – 28 , 31 , 33 , 35 – 43 ] (last ten years), and the most recent study included was from 2022 [ 40 ]. Less than a fifth of the studies used data from RCTs ( n = 5) [ 20 , 21 , 29 , 36 , 37 ].…”

“…Less than a fifth of the studies used data from RCTs ( n = 5) [ 20 , 21 , 29 , 36 , 37 ]. Alzheimer’s disease (AD) was the most included type of dementia, and it was the sole subtype evaluated in over a third of the studies ( n = 11) [ 20 , 25 , 27 , 28 , 32 , 39 , 43 – 47 ] ; four studies considered AD in combination with dementia with Lewy Bodies (DLB) [ 21 , 31 ], vascular dementia (VD) [ 34 ] or mixed [ 30 ]. Seven of the studies considered any type of dementia [ 19 , 24 , 33 , 35 , 37 , 38 , 40 ], and eight studies did not specify the type of dementia under investigation [ 22 , 23 , 26 , 29 , 36 , 41 , 42 , 48 ].…”

“…The study sample sizes ranged from 48 [ 32 ] – 1004 [ 36 ] participants. EQ-5D-3L was most commonly collected ( n = 27), and only four studies collected EQ-5D-5L [ 33 , 41 – 43 ] (one study considered both EQ-5D-3L and EQ-5D-5L [ 33 ]). There was a mix of study settings; eleven studies focused solely on community dwelling PwD [ 20 , 29 , 30 , 33 , 34 , 37 , 41 , 44 – 47 ], while six studies collected data from institutionalised residents alone [ 22 , 23 , 26 , 36 , 42 , 43 ].…”

“…EQ-5D-3L was most commonly collected ( n = 27), and only four studies collected EQ-5D-5L [ 33 , 41 – 43 ] (one study considered both EQ-5D-3L and EQ-5D-5L [ 33 ]). There was a mix of study settings; eleven studies focused solely on community dwelling PwD [ 20 , 29 , 30 , 33 , 34 , 37 , 41 , 44 – 47 ], while six studies collected data from institutionalised residents alone [ 22 , 23 , 26 , 36 , 42 , 43 ]. Quality of life data were collected entirely via a proxy ( n = 9) [ 22 , 23 , 25 – 27 , 34 , 43 , 45 , 46 ] or self-report ( n = 3) [ 31 , 44 , 47 ] in some studies, however over half of the studies used both proxy and self-report ( n = 17) [ 19 – 21 , 28 – 30 , 32 , 33 , 35 – 42 , 44 , 45 ].…”

“…Where self-report was exclusively used, the studies explored people with mild dementia. Of the seventeen studies that included people with severe dementia within their sample, ten studies used both self and proxy reports [ 19 , 21 , 28 , 30 , 35 , 36 , 38 – 40 , 48 ], six studies used proxy-reports alone [ 22 , 23 , 25 , 26 , 43 , 46 ] and one study did not report the rater type [ 24 ]. The proxy-type was most commonly an informal caregiver (i.e., family member, friend, or neighbour), however four studies also included formal caregivers [ 19 , 26 , 36 , 41 ] and one study additionally used clinicians to proxy report [ 34 ].…”