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-moderate^a

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-severe^a

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-severe^a

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)

3L^b

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-severe^a

44% mild/moderate; 56% severe

13.0 (8.5)

84.7 (6.5)

3L^b

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

3L^b

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% severe^a

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-moderate^a

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-severe^a

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