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Table 3 Variables referring to the understanding of the dementia and associations with patient’s comfort when dying

From: Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study

Variable

Response% or mean (SD)

Mean EOLD-CAD patient comfort score at the end of life (SD)

Difference in mean patient comfort relative to the reference group or per unit increase on scale

  

Unadjusted (95% CI)

Adjusteda(95% CI)

Families (baseline assessment, upon admission)

    

(1) Comprehension of complications

 

(n = 161; overall: 34.1 SD 5.6)

(n = 161)

(n = 151)

- understood

50

33.9 (6.5)

reference

reference

- not understood

32

33.8 (4.7)

−0.1 (−2.1; 1.9)

−0.3 (−2.4; 1.9)

- refused (do not know and similar comments)

18

35.3 (4.5)

1.4 (−0.7; 3.4)

0.9 (−1.1; 2.9)

   

P = 0.31b

P = 0.50b

(2) Comprehension of prognosis: life expectancy

 

(n = 161; overall: 34.1 SD 5.6)

(n = 161)

(n = 151)

- 12 months or less (<1 month: 1%, 1 to 6 months: 5%,

    

7 to 12 months: 9%)

15

34.1 (7.5)

reference

reference

- more than 12 months

32

33.7 (5.7)

−0.4 (−3.5; 2.7)

−0.6 (−3.6;2.3)

- do not know

53

34.4 (5.0)

0.3 (−2.9; 3.4)

−0.6 (−3.5;2.4)

   

P = 0.82b

P = 0.91b

(3) Having been counseled on health problems in later stages

 

(n = 161; overall: 34.1 SD 5.6)

(n = 161)

(n = 151)

-yes

39

34.7 (5.7)

reference

reference

-no

61

33.8 (5.6)

−0.9 (−2.6; 0.9)

−0.9 (−2.8;1.1)

(4) Having been counseled on how long patient may live

 

(n = 160; overall:

(n = 160)

(n = 150)

 

34.1 (5.6)

  

-yes

21

34.5 (6.2)

reference

reference

-no

79

34.0 (5.5)

−0.6 (−2.7; 1.6)

−0.6 (−2.8;1.6)

(5) Perception of dementia as “a disease you can die from”

 

(n = 160 overall)

(n = 160)

(n = 150)

- 1 to 5 scale, coefficient bc

2.5 (1.2)

34.2 SD 5.6

b = −0.7 (−1.5; -0.01)

b = −0.8 (−1.5;-0.06)

- completely agree

29

35.1 (5.6)

reference

reference

- partly agree

14

34.9 (7.1)

−0.1 (−3.4; 3.1)

−0.1 (−3.3; 3.1)

- neither agree, nor disagree

13

34.8 (4.6)

−0.3 (−2.7; 2.0)

−1.0 (−3.6; 1.6)

- partly disagree

8

33.8 (4.4)

−1.2 (−4.3; 1.8)

−1.6 (−4.3;1.1)

- completely disagree

9

31.5 (5.5)

−3.6 (−6.5; -0.7)

−3.6 (−6.5;-0.7)

- do not know

28

33.5 (5.6)

−1.5 (−4.5; 1.4)

−1.5 (−4.5; 1.6)

Physicians

    

(6) Comprehension of prognosis: perceived life expectancy (baseline)

 

(n = 150; overall: 34.4 SD 5.4)

(n = 150)

(n = 138)

- 12 months or less (<1 month: 1%, 1 to 6 months: 9%, 7 to 12 months: 16%)

25

33.6 (6.5)

reference

reference

- more than 12 months

59

34.4 (5.0)

0.8 (−1.5; 3.2)

0.3 (−2.1; 2.8)

- do not know

16

35.5 (5.1)

1.9 (−0.9;4.7)

1.2 (−1.7; 4.1)

   

P = 0.39b

P = 0.67b

(7) Having counseled how long the patient may live (baseline)

 

(n = 150; overall:

(n = 150)

(n = 138)

34.4 SD 5.4)

  

-yes

21

34.9 (4.9)

reference

reference

-no

79

34.2 (5.5)

−0.7 (−2.7; 1.3)

−0.8 (−2.8;1.3)

(8) Perception of dementia as “a disease you can die from” (midway study)

 

(n = 144 overall)

(n = 144)

(n = 138)

- 1 to 5 scale, coefficient bc

4.7 (0.8)

34.1 SD 5.7

b = −1.0 (−2.4; 0.4)

b = −1.0 (−2.2; 0.2)

- completely agree

85

34.2 (5.9)

reference

reference

- partly agree

9

35.8 (2.3)

1.5 (0.1; 2.9)

1.8 (0.5; 3.1)

- neither agree, nor disagree

3

30.5 (5.4)

−3.7 (−7.7; 0.3)

−3.1 (−7.3;1.2)

- partly disagree

0

-

-

-

- completely disagree

3

29.6 (7.3)

−4.6 (−11; 2.2)

−4.9 (−11;1.3)

Families and physicians

    

Perception of dementia as “a disease you can die from,” 2 to 10 scale, coefficient bc

8.2 (1.5)

(n = 160 overall) 34.2 SD 5.6

(n = 160) b = −0.8 (−1.4;-0.2)

(n = 143) b = −0.9 (−1.5;-0.2) d

  1. EOLD-CAD, End-of-life in Dementia-Comfort Assessment in Dying scale (possible range: 14 to 42, higher scores represent better comfort).
  2. aAdjusted for potential confounders: assessment of EOLD-CAD by physician versus nurse; for three variables as they related to the time of the patient’s death: families’ baseline understanding, the physician’s assessment of perception of dementia, and time since the first death in the study; and family education when applicable (for example, no adjustment for family variables in analyzing associations with physician variables only). Adjustment was without imputation which explains the lower n. With simple imputation of mean or median as appropriate, confidence intervals were minimally smaller and coefficients were similar.
  3. bThe P-values refer to GEE versions of ANOVA (unadjusted P-value) or ANCOVA (adjusted).
  4. cb is the regression coefficient for 1-point increment disagreement, where “neither agree, nor disagree” is combined with “don’t know” (families).
  5. dThe coefficients and confidence intervals were similar (adjusted: b = −0.9 (−1.5; -0.3)) when eight cases in which the physician completed the after-death assessment and baseline assessment at the same time, were excluded from the analyses.
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BMC Medicine

ISSN: 1741-7015

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