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Table 2 Carer outcomes at study entry, last visit, and 2 and 7 months post death

From: Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods

 

All carers (n = 35)

Non-bereaved carers (n = 23)

Bereaved carers (n = 12)

Study entry (n = 34)

Final assessment with person with dementiaa (n = 34)

Final assessment with person with dementiaa (n = 23)

Final assessment with person with dementiaa (n = 11)

2 months post death (n = 11)

7 months post death (n = 9)

ZBI, median (IQR)

17 (9–30)

11 (6–17)

11 (6–18)

11 (4–16)

-

-

Brief COPE mean (SD)

      

 Use of instrumental support

2.3 (0.8)

2.3 (0.7)

2.2 (0.5)

2.4 (0.9)

-

-

 Substance useb

2.4 (0.7)

2.4 (0.8)

2.4 (0.8)

2.5 (0.8)

-

-

 Denialb

2.5 (1.1)

2.3 (0.7)

2.3 (0.8)

2.2 (0.4)

-

-

 Planning

2.9 (1.3)

2.8 (1.5)

3.2 (1.7)

2.0 (0.0)

-

-

 Behavioural disengagementb

3.3 (1.5)

2.9 (1.2)

3.0 (1.2)

2.5 (1.0)

-

-

 Religion

3.3 (1.7)

3.3 (1.8)

3.4 (1.9)

3.2 (1.5)

-

-

 Ventingb

3.5 (1.4)

3.3 (1.6)

3.3 (1.8)

3.2 (1.3)

-

-

 Self-distractionb

3.7 (1.7)

3.2 (1.4)

3.2 (1.5)

3.3 (1.3)

-

-

 Positive reframing

3.7 (1.9)

3.5 (1.8)

3.2 (1.5)

4.2 (2.3)

-

-

 Self-blameb

3.7 (1.9)

4.0 (1.9)

4.0 (1.6)

3.8 (2.4)

-

-

 Active coping

3.9 (2.2)

3.5 (1.6)

3.1 (1.2)

4.3 (2.0)

-

-

 Acceptance

4.0 (2.4)

3.9 (2.3)

3.6 (2.1)

4.5 (2.7)

-

-

 Use of emotional support

4.7 (1.9)

4.8 (2.0)

4.7 (2.1)

4.9 (1.9)

-

-

 Humour

6.5 (1.8)

6.5 (2.1)

6.5 (2.0)

6.5 (2.3)

-

-

SWC-EOLD, median (IQR)

30 (26–34)

30 (29–33)

30 (29–33)

29 (28–35)

31 (25–37)

-

ICG, median (IQR)

27 (22–37)

24 (18–33)

22 (16–35)

27 (20–32)

-

23 (19–29)

HADS, n = n (%) cut off ≥8

34

34

23

11

10

8

 anxiety

14 (41)

11 (32)

8 (35)

3 (27)

3 (30)

2 (25)

 depression

9 (26)

7 (21)

5 (21)

2(18)

4 (40)

1 (13)

 Both anxiety and depression

7 (20)

6 (17)

4 (17)

2 (18)

3 (30)

1 (13)

SF-12 n=

32

33

22

11

11

9

 Physical component mean (SD)

50.32 (8.94)

50.73 (9.01)

50.15 (9.36)

51.88 (6.22)

48.18 (12.26)

46.40 (11.63)

 Mental component mean (SD)

47.57 (11.08)

46.61 (11.87)

47.07 (11.98)

45.70 (11.36)

44.88 (15.29)

52.52 (9.74)

  1. aThe last assessment that the carer undertook while their relative with dementia was alive. For non-bereaved carers this would have been at the end of the 9 month study period, while for bereaved carers this would be the final assessment in the month before their relative died within the 9 month study period
  2. bDysfunctional coping strategies; Brief COPE = Brief Coping Orientation to Problems Experienced; SD = Standard Deviation; SF-12 = Short Form 12; ZBI = Zarit Burden Interview; IQR = Interquartile Range; HADS = Hospital Anxiety and Depression Scale; ICG = Inventory of Complicated Grief; SWC-EOLD = Satisfaction with Care at EOL in Dementia Scale
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BMC Geriatrics

ISSN: 1471-2318

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