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. 2022 Nov 19;20:152. doi: 10.1186/s12955-022-02062-1

Table 2.

Summary characteristics of included studies

Author, year Country Study design (of data origin) n Type dementia Stage of dementia Severity proportion (%) Mean MMSE (SD) Mean age (SD) EQ-5D: 3L or 5L Residence (% institutionalised) Self or proxy QoL Proxy type Mode of administration
Ankri, 2003 [19] France Non-interventional 142 Any Mild-to-severe 24.3% mild; 47.1% moderate; 27.9% severe 12.8 (5.6) 82.9 (8.32) 3L 41 Both FC & IC I
Ashizawa, 2021 [43] Japan Prospective cohort study 287 AD Mild-to-severe NR NR 86.1 (6.4) 5L 100 Proxy FC & IC SA
Bhattacharya, 2010 [20] Denmark RCT 321 AD Mild NR 24.0 (2.7) 76.2 (7.1) 3L 0 Both IC I
Bonfiglio, 2019 [41] Japan Cross-sectional 141 NR Mild NR 24.9 (2.6) 78.8 (6.3) 5L 0 Both FC & IC SA
Bostrom, 2007 [21] Sweden RCT 68 DLB or AD Mild-to-severe NR 16.9 (0–30) 77.8 (63–92)c 3L 28 Both IC I
Bryan, 2005 [34] UK Non-interventional 64 AD and VD Very mild-to-moderatea 5% very mild; 56% mild, 39% moderate 18.0 (5.8) 76 (53–91)c 3L 0 Proxy IC & C SA
Castro-Monteiro, 2014 [22] Spain Multicentre longitudinal cohort 274 NR Mild-to-severea 18% mild; 26% moderate; 56% severe NR 84.7 (6.51) 3L 100 Proxy IC I
Diaz-Redondo, 2014 [23] Spain Cross-sectional 525 NR Mild-to-severea 14% mild; 25% moderate; 62% severe NR 85.6 (6.7) 3L 100 Proxy IC NR
Author, year Country Study design (of data origin) n Type dementia Stage of dementia Severity proportion (%) Mean MMSE (SD) Mean age (SD) EQ-5D: 3L or 5L Residence (% institutionalised) Self or proxy QoL Proxy type
Easton, 2018 [42] Australia Cross-sectional 541 NR Very mild-to-moderate 55% very mild; 42% mild; 4% moderate NR 85.5 (8.5) 5L 100 Both IC I
Ersek, 2010 [24] Hungary Cross-sectional 88 Any Very mild-to-severe 16% very mild; 27% mild; 25% moderate’; 16% severe 16.7 (7.2) 77.4 (9.2) 3Lb NR NR IC NR
Farina, 2020 [35] UK Cohort 307 Any Mild-to-severe 36% mild; 33% moderate; 32% severe 14.9 (9.1) 80.9 (8.4) 3L 21 Both IC SA
Garre-Olmo, 2017 [25] Spain Cross-sectional multicentre 343 AD Mild-to-severe 32.1% mild; 36.7% moderate; 31.2% severe 14.2 (6.3) 78.9 (7.4) 3L NR Proxy IC I
Gonzalez-Velez, 2015 [26] Spain Multicentre longitudinal cohort 412 NR Mild/moderate-to-severea 44% mild/moderate; 56% severe 13.0 (8.5) 84.7 (6.5) 3Lb 100 Proxy FC & IC SA
Author, year Country Study design (of data origin) n Type dementia Stage of dementia Severity proportion (%) Mean MMSE (SD) Mean age (SD) EQ-5D: 3L or 5L Residence (% institutionalised) Self or proxy QoL Proxy type
Haaksma, 2018 [27] Netherlands Multicentre longitudinal prospective cohort 331 AD Mild-to-moderate 65% very mild 21.9 (3.7) 74.9 (10.2) 3L NR Proxy IC I
Heßmann et al., 2016 [28] Germany Non-interventional 395 AD Mild-to-severe 13% very mild; 33% mild; 27% moderate; 28% severe 18.8 (8.3) 79 3L 31 Both IC I
Karlawish, 2008 [1] [44] USA Non-interventional 110 AD Very mild-to-moderate 32% very mild; 39% mild; 29% moderate 21.3 (4.3) 76.8 (2.7) 3L 0 Self n/a I
Karlawish, 2008 [2] [45] USA Non-interventional 110 AD Very mild-to-moderate 28% very mild; 37% mild; 35% moderate 20.8 (4.4) 76.8 (2.7) 3L 0 Proxy IC I
King 2022 [40] UK Cohort study 243 Any Mild-to-severe  ~ 33% each for mild, moderate and severe 15.9 (9.1) 80.1 (8.6) 3L 18.7 Both IC I
Kunz, 2010 [29] Germany RCT 399 NR Mild-to-moderate 65% mild; 35% moderate 18.6 (3.8) 80.2 (6.7) 3L 0 Both IC I
Kuo, 2010 [48] Taiwan Cost analysis 140 NR Mild-to-severe 24% mild; 30% mild-moderate; 21% moderate; 25% severe NR 79.7 3Lb 36 Both IC I
Author, year Country Study design (of data origin) n Type dementia Stage of dementia Severity proportion (%) Mean MMSE (SD) Mean age (SD) EQ-5D: 3L or 5L Residence (% institutionalised) Self or proxy QoL Proxy type
Martin, 2019 [36] UK RCT 1004 NR Mild-to-severe 4% very mild; 23% mild; 39% moderate; 34% severea NR 85.5 (58–102.6)c 3L 100 Both FC & IC I
Michalowsky, 2021 [33] Germany Interventional study 77 Any Mild-to-moderate NR 18.6 (7.4) 80.2 (6.4) Both 0 Both FC & IC I
Naglie, 2011 [1] [47] Canada Longitudinal cohort 370 AD Very mild-to-moderate 71% very mild; 20% mild; 9% moderate 22.3 (4.3) 80.7 (7.8) 3L 0 Self n/a I
Naglie, 2011 [2] [46] Canada Longitudinal cohort 412 AD Very mild-to-severe 64% very mild; 18% mild; 10% moderate; 8% severe 20.8 (6.2) 80.7 (7.9) 3L 0 Proxy IC I
Orgeta, 2015 [37] UK RCT 478 Any Mild-to-moderatea 75% mild; 25% moderate NR 75.5 (7.3) 3L 0 Both IC I
Schiffczyk, 2010 [30] Germany Prospective cohort 137 AD or mixed Mild-to-severe 37% mild; 48% moderate; 15% severe 16.9 (6.4) 69.9 (7.6) 3L 0 Both IC I
Author, year Country Study design (of data origin) n Type dementia Stage of dementia Severity proportion (%) Mean MMSE (SD) Mean age (SD) EQ-5D: 3L or 5L Residence (% institutionalised) Self or proxy QoL Proxy type
Sheehan, 2012 [38] UK Non-interventional 112 Any Mild-to-severea 2% very mild; 13% mild; 59% moderate; 27% severe NR 85 (66–99)c 3L 25 Both IC I
Trigg, 2015 [39] UK Multicentre cohort 145 AD Very mild-to-severe NR 15.0 (7.0) 77.8 (9.2) 3L NR Both Unclear I
van de Beek, 2019 [31] Netherlands Multicentre cohort 138 AD and DLB MCI or dementia NR 25 [22-27] 69.7 (5.9) 3L NR Self n/a NR
Vogel, 2006 [32] Denmark Prospective cohort 48 AD Very mild NR 24.9 (2.3) 77.0 (5.8) 3L NR Both IC PwD – I; Proxy – SA

AD Alzheimer’s disease, C Clinician, DLB Dementia with Lewy bodies, FC Formal caregiver, IC Informal caregiver, QoL Quality of life, RCT Randomised controlled trial, UK United Kingdom, USA United states of America, VD Vascular dementia, 3L Three-level, 5L Five-level, NR Not reported, n/a Not applicable, MCI Mild cognitive impairment, I Interviewer, SA Self-administered

aDisease severity defined by CDR (versus MMSE in all other studies)

bEQ-5D version not reported, however due to year of the studies – EQ-5D-3L has been assumed

cStudy reported range (not standard deviation)