Table 2 Item distribution on the German version of the DEMQOL and DEMQOL-Proxy (No. of original item order; n = 201)
DEMQOL | DEMQOL-Proxy | ||||||||||||||||
No. | Item | Response options | Descriptive | No. | Item | Response options | Descriptive | ||||||||||
a lot | quite a bit | a little | not at all | missing | mean (±SD) | a lot | quite a bit | a little | not at all | missing | mean (±SD) | ||||||
Feelings In the last week, have you felt … | Feelings In the last week, would you say that (your relative) has felt … | ||||||||||||||||
1. | …cheerful? a | 85 | 90 | 24 | 2 | 0 | 3.28 | (±0.71) | 1. | …cheerful? a | 67 | 91 | 41 | 2 | 0 | 3.11 | (±0.75) |
2. | …worried or anxious? | 22 | 65 | 60 | 54 | 0 | 2.73 | (±0.98) | 2. | …worried or anxious? | 31 | 90 | 50 | 29 | 1 | 2.39 | (±0.92) |
3. | …that you are enjoying life? a | 110 | 61 | 27 | 3 | 0 | 3.38 | (±0.77) | |||||||||
4. | …frustrated? | 14 | 43 | 75 | 69 | 0 | 2.99 | (±0.92) | 3. | …frustrated? | 15 | 73 | 72 | 41 | 0 | 2.69 | (±0.88) |
5. | …confident? a | 82 | 77 | 34 | 8 | 0 | 3.16 | (±0.85) | |||||||||
6. | …full of energy? a | 93 | 75 | 26 | 6 | 1 | 3.28 | (±0.80) | 4. | …full of energy? a | 42 | 77 | 62 | 20 | 0 | 2.70 | (±0.91) |
7. | …sad? | 17 | 59 | 64 | 61 | 0 | 2.84 | (±0.96) | 5. | …sad? | 14 | 86 | 68 | 33 | 0 | 2.60 | (±0.84) |
6. | …content? a | 104 | 72 | 22 | 2 | 1 | 3.39 | (±0.72) | |||||||||
8. | …lonely? | 12 | 24 | 51 | 114 | 0 | 3.33 | (±0.91) | |||||||||
9. | …distressed? | 6 | 23 | 62 | 110 | 0 | 3.37 | (±0.80) | 7. | …distressed? | 27 | 94 | 51 | 29 | 0 | 2.41 | (±0.90) |
10. | …lively? a | 73 | 74 | 38 | 16 | 0 | 3.01 | (±0.94) | 8. | …lively? a | 55 | 76 | 52 | 18 | 0 | 2.84 | (±0.93) |
11. | …irritable? | 19 | 50 | 74 | 57 | 1 | 2.85 | (±0.95) | 9. | …irritable? | 30 | 75 | 63 | 32 | 1 | 2.49 | (±0.93) |
12. | …fed-up? | 4 | 40 | 54 | 103 | 0 | 3.27 | (±0.85) | 10. | …fed-up? | 12 | 69 | 64 | 56 | 0 | 2.82 | (±0.91) |
11. | …that he/she has things to look forward to? a | 80 | 92 | 26 | 3 | 0 | 3.24 | (±0.73) | |||||||||
13. | …that there are things that youwanted to do but couldn’t? | 8 | 42 | 68 | 82 | 1 | 3.12 | (±0.88) | |||||||||
Memory In the last week, how worried have you been about … | Memory In the last week, how worried would you say (your relative) has been about … | ||||||||||||||||
12. | …his/her memory in general? | 89 | 73 | 26 | 13 | 0 | 1.82 | (±0.89) | |||||||||
13. | …forgetting things that happened a long time ago? | 28 | 58 | 73 | 42 | 0 | 2.64 | (±0.96) | |||||||||
14. | …forgetting things that happened recently? | 59 | 79 | 35 | 28 | 0 | 2.16 | (±1.00) | 14. | …forgetting things that happened recently? | 85 | 66 | 33 | 15 | 2 | 1.89 | (±0.94) |
15. | …forgetting who people are? | 26 | 44 | 42 | 88 | 1 | 2.96 | (±1.09) | |||||||||
15. | …forgetting people’s names? | 52 | 79 | 45 | 24 | 1 | 2.21 | (±0.96) | |||||||||
16. | …forgetting where he/she is? | 12 | 24 | 61 | 104 | 0 | 3.28 | (±0.90) | |||||||||
16. | …forgetting what day it is? | 27 | 51 | 50 | 73 | 0 | 2.84 | (±1.07) | 17. | …forgetting what day it is? | 36 | 56 | 50 | 59 | 0 | 2.66 | (±1.08) |
17. | …your thoughts being muddled? | 32 | 55 | 56 | 58 | 0 | 2.70 | (±1.05) | 18. | …his/her thoughts being muddled? | 30 | 68 | 54 | 48 | 1 | 2.60 | (±1.01) |
18. | …difficulty making decisions? | 11 | 51 | 54 | 85 | 0 | 3.06 | (±0.95) | 19. | …difficulty making decisions? | 29 | 54 | 66 | 51 | 1 | 2.70 | (±1.01) |
19. | …poor concentration? | 63 | 65 | 43 | 29 | 1 | 2.19 | (±1.04) | |||||||||
24. | …making yourself understood? b | 14 | 31 | 57 | 99 | 0 | 3.20 | (±0.94) | 20. | …making him/herself understood? | 12 | 48 | 56 | 85 | 0 | 3.06 | (±0.95) |
Everyday life In the last week, how worried have you been about … | Everyday life In the last week, how worried would you say (your relative) has been about … | ||||||||||||||||
20. | …not having enough company? | 4 | 17 | 51 | 129 | 0 | 3.52 d | (±0.74) | 28. | …not having enough company? | 5 | 25 | 49 | 121 | 1 | 3.43d | (±0.81) |
21. | …how you get on with people close to you? | 8 | 19 | 47 | 126 | 1 | 3.46 d | (±0.83) | |||||||||
22. | …getting the affection that you want? | 4 | 17 | 42 | 137 | 1 | 3.56 d | (±0.73) | |||||||||
23. | …people not listening to you? | 9 | 25 | 50 | 117 | 0 | 3.37 | (±0.87) | |||||||||
25. | …getting help when you need it? | 4 | 23 | 42 | 132 | 0 | 3.50 d | (±0.78) | |||||||||
26. | …getting to the toilet in time? | 12 | 20 | 20 | 149 | 0 | 3.52 d | (±0.90) | |||||||||
27. | …how you feel in yourself? | 14 | 29 | 45 | 113 | 0 | 3.28 | (±0.95) | |||||||||
28. | …your health overall? | 28 | 67 | 49 | 57 | 0 | 2.67 | (±1.04) | |||||||||
21. | …keeping him−/herself clean(e.g. washing and bathing)? | 2 | 7 | 23 | 169 | 0 | 3.79d | (±0.55) | |||||||||
22. | …keeping him−/herself looking nice? | 6 | 18 | 41 | 136 | 0 | 3.53d | (±0.78) | |||||||||
23. | …getting what he/she wants from the shops? | 3 | 25 | 49 | 124 | 0 | 3.46d | (±0.77) | |||||||||
24. | …using money to pay for things? | 12 | 23 | 38 | 128 | 0 | 3.40d | (±0.91) | |||||||||
25. | …looking after his/her finances? | 14 | 38 | 37 | 112 | 0 | 3.23 | (±0.99) | |||||||||
26. | …things taking longer than they used to? | 33 | 61 | 48 | 58 | 1 | 2.66 | (±1.07) | |||||||||
27. | …getting in touch with people? | 1 | 31 | 61 | 108 | 0 | 3.37 | (±0.76) | |||||||||
29. | …not being able to help other people? | 3 | 22 | 58 | 118 | 0 | 3.45d | (±0.75) | |||||||||
30. | …not playing a useful part in things? | 12 | 41 | 41 | 107 | 0 | 3.21 | (±0.97) | |||||||||
31. | …his/her physical health? | 37 | 73 | 42 | 48 | 1 | 2.51 | (±1.05) | |||||||||
Frequencies of the response options in total, n | 860 | 1316 | 1340 | 2105 | 7 | Frequencies of the response options in total, n | 978 | 1785 | 1522 | 1935 | 11 | ||||||
Frequencies of the response options in total, % | 15.3 | 23.4 | 23.8 | 37.5 | 0.1 | Frequencies of the response options in total, % | 15.7 | 28.7 | 24.5 | 31.1 | 0.2 | ||||||
No. | Item | Response options | Descriptive | No. | Item | Response options | Descriptive | ||||||||||
very good | good | fair | poor | missing | mean (±SD) | very good | good | fair | poor | missing | mean (±SD) | ||||||
OverallThinking about all of these things in the last week, how would you rate … | OverallThinking about all of these things in the last week, how would you say (your relative) would rate … | ||||||||||||||||
29. | …your quality of life overall?c | 23 | 139 | 37 | 2 | 0 | 2.91 | (±0.58) | 32. | …his/her quality of life overall? a | 11 | 125 | 58 | 7 | 0 | 2.70 | (±0.63) |
Frequencies of the response options, % | 11.4 | 69.2 | 18.4 | 1.0 | 0.0 | Frequencies of the response options, % | 5.5 | 62.2 | 28.9 | 3.5 | 0.0 | ||||||