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Table 5 Studies addressing issues discuss in Statement 9: Study characteristics, intervention content and outcomes reported

From: UK quality statements on end of life care in dementia: a systematic review of research evidence

Study and country

Design

Population

Intervention content, data collection, analysis and number with palliative care assessment

Resultsa: Impact on care outcomes of assessment in the community to identify, and plan palliative care needs

Arcand et al. 2009 [36] Canada

Pre and post intervention study.

Relatives of residents who died with advanced dementia, and where dementia was the main physician recorded diagnosis. pre intervention Mean age 91 years and 90 % female and post intervention. 87 years and 71 % female.

Intervention educational Delivered by geriatric nurse specialist for all care home staff and physicians. Topics included symptom control & palliative care in advanced dementia, advance care planning & medical guidelines for considering prognosis. Information booklet for use by staff and to give to family members.

Mean difference in scores and confidence intervals pre and post interventiona

One 387 bed nursing home (NH).

48 deceased residents, 27 pre-intervention, and 21 post-intervention.

Data collection 4–16 months post bereavement. Family satisfaction with care using validated scale “After death bereaved family member interview/ NH version”.

Communication

 

1.40 [−3.04, 0.24]

Unit of analysis NH

Analysis t-tests statistics

Care according to

Patient’s wishes

 

−0.10 [−1.18, 0.98]

Symptom control

 

−0.80 [−1.96, 0.36]

Dying with dignity

 

0.10 [−1.22, 1.42]

Family emotional

Support

 

1.00 [−2.85, 0.85]

Satisfaction

 

−1.00 [−2.05, 0.05]

ausing “After death bereaved family member interview/ Nursing Home version”.

None of the mean differences were signficiant.

Hanson et al. 2005 [37] US

Pre and post intervention study, 7 NH with another 2 NH acting as a control. This was to gauge temporal trends.

All residents, 43 % had dementia diagnosis and 76 % cognitive impairment.

Intervention educational Plan-do-study-act design. NH identified staff members to form interdisciplinary palliative care team who attended one day conference; education on hospice enrolment and services, pain management, advance care plans and communication. Then monthly in house education and support (x6 sessions) available to all clinical staff; help with designing procedures & protocols and the use of assessment tools.

Results in numbers:

 

Pre (%)

 

Post (%)

 

N = 345

 

n = 346

Unit of analysis NH

Mean age 82 years, 74 % white, 81 % female.

Data collection from medical records and after death interview at least three months after the death.

Hospice care

4.0

 

6.8*

345 residents pre intervention and 346 post intervention

Analysis chi-squared statistics

Pain assessed

18

 

60*

113 residents in 2 control NHs No significant differences between intervention and control NHs at baseline

Receiving pain

Medication

77

 

81

Receiving non-drug

Treatment for pain

15

 

34*

DNR order

58

 

65*

DNR flagged in chart

45

 

60*

Documented discussion on preferences

4

 

17*

*Statistically significant, P value equal or less than 0.05, chi-squared test

Livingston, 2013 et al. [38] UK

Pre and post intervention study,

Residents with dementia of any severity (most advanced dementia MMSE mean = 5)

Educational interventional 10 session training program for all staff covering structured listening, empathy communication skills, advance care planning and preferred place of care.

 

Pre

Post

X2

P value

One 120 bed NH.

Residents with dementia of any severity (most advanced dementia MMSE mean = 5)

Data collection from medical records & after-death bereaved family member interview

EOL talk

04/30

13/28

15.2

0.001

Unit of an analysis the NH

59 deaths, 30 1 year pre-study, 29 1 year post study.

Analysis before and after intervention using t-tests and Mann Whitney for means or medians according to data distribution

DNR orders

04/28

16/22

17.4

0.001

EOL talk +

DNR order

01/04

12/16

5.3

0.06

Deaths in care home

14/30

22/29

5.3

0.02

Intervention

In line with wishes

05/07

13/13

4.1

0.04

Days in hospital

Last 3 months

4

1.25

29.0a

0.22

Care

satisfaction

7.5 (1.3)

9.1 (2.4)

17.6a

0.06

at test or Mann–Whitney

  1. aResults presented as the most complete reported in the published paper, EOL = end of life, DNR = Do not resuscitate, NH = nursing home, X2 = Chi –Squared test