Background
Aim
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Statement 4 (S4): People with dementia have an assessment and an ongoing personalised care plan agreed across health and social care that identifies a named care coordinator and addresses their individual needs.
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Statement 5 (S5): People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of advance statements, advance decisions to refuse treatment, lasting power of attorney and preferred priorities of care.
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Statement 9 (S9): People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs.
Method
Inclusion criteria
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S4: (1) a named care coordinator, (2) an assessment of health and social care needs, (3) a personalised care plan, and (4) integration/co-ordination of care services.
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S5: (1) people with early dementia who retained mental capacity and had made decisions regarding future healthcare preferences including the use of advance statements and/or advance decisions to refuse treatment and/or lasting power of attorney and/or preferred priorities of care.
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S9: (1) an assessment of palliative care needs, (2) a palliative care plan, and (3) delivery within a primary care or community setting.
Exclusion criteria
Information sources
Search strategy
Search terms for dementia: Dementia or Alzheimera or lewy body or lewy bodies or cognitive impaira or capacity impaira or lacka capacity or memory loss | |
Search terms used for standard S4: | |
Key worker or key carer or named worker or named care co-ordinator or named carer or community psychiatric nurse or liaison worker or link worker or community health nursing. | |
Search terms used for standard S5:
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(Advancea (plan or care or directive or decision or contract or statement)) or living willa or right to die or power of attorney or ulysses (contracta or directivea) or PPC or preferred priorities of care or anticipatory care plan. | |
Search terms used for standard S9: | |
(Primary care or general practice or community care or care in the community or family physician or community nurse or practice nurse) AND (Palliative care or end-of-life or symptomatic medicine or end of life or supportive care). |
Assessment of quality and risk of bias
Grade I: Randomised controlled trial (RCT)
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IA Calculation of sample size and accurate, standard definition of outcome variables | |
IB Accurate and standard definition of outcome variables. | |
IC Neither of the above | |
Grade II: Prospective study with a comparison group (non randomised controlled trial, observational study) or retrospective study which controls for confounding variables
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IIA Calculation of sample sizea and accurate, standard definition of outcome variables and adjustments for the effects of important confounding variables | |
IIB One or more of the above | |
IIC Neither of the above | |
Grade III Retrospective or observational or cross-sectional studies
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IIIA Comparison group, calculation of sample size and accurate, standard definition of outcome variables | |
IIIB One or more of the above | |
IIIC Neither of the above. |
Outcomes of interest
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The families’ satisfaction with care. This could be captured by the Satisfaction With Care at the End- Of-Life in Dementia scale [32].
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Types of care and treatment such as whether the person was admitted to a hospice or was hydrated artificially.
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Place of death.
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Measures of family wellbeing and QOL.
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Economic costs.
Results
Study | Reason for exclusion |
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Bass et al. 2003 [33] | Intervention ineligible |
Callahan et al. 2006 [20] | Not evaluating QOL in patients with advanced dementia |
Challis et al. 2002 [23] | No outcome on QOL at the EOL |
Eloniemi-Sulkava et al. 2001 [24] | No outcome on QOL at the EOL |
Eloniemi-Sulkava et al. 2009 [25] | No outcome on QOL at the EOL |
Fortinsky et al. 2009 [21] | No outcome on QOL at the EOL |
Samus et al. 2014 [34] | No outcome on QOL at the EOL |
Shega et al. 2008 [18] | Whilst appropriate outcomes were compared with those that received hospice care with those that didn’t both groups were assessed for palliative care needs. (QS5) |
Specht et al. 2009 [35] | No outcome on QOL at the EOL |
Vickrey et al. 2006 [22] | No outcome on QOL at the EOL |
Statement 5 (S5): People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of advance statements, advance decisions to refuse treatment, Lasting Power of Attorney and Preferred Priorities of Care
Statement about future care
Quality of life, symptoms and distress in the person with dementia
Study & country | Design | Population | Intervention content, analysisa and number with a statement about future care (SFC) or related document | Results: Impact on care outcomes of having or not having advanced directives or related documentsa | ||
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Nicholas 2014 et al. [39] USA | Retrospective study which controls for confounding variables Data from 3876 participants of the Health & Retirement Study (HRS) who died between 1998 and 2007. Study exit interview (after death) by knowledgeable informant (KI) | Age 65 years and over, consented to share Medicare claims data for last 6 months of life. Includes nursing home (NH) (n = 1812) and community dwelling people (n = 2064). 21.7 % severe dementia, 43.1 % mild dementia or cognitive impairment, 35.2 % normal cognition (as assessed at last HRS interview –mean 436 days before death – using validated cognition measures). Results only reported for severe dementia. | Comparison of end-of-life care with those that had and those that didn’t have a written advance directive (AD) or “living will” as stated by proxy respondent in post-mortem interview. General liner model and logistic regression to generate predicted spending and probabilities of use in last six months of life. Adjustments were made for patient characteristics, including cognitive functioning, an AD and their interaction, stratified by NH use in last 6 months. 36.4 % of people with severe dementia had a treatment limiting AD (40 % of NH, 27.4 % of community dwelling). | REGRESSION: results presented for subgroup with severe dementia only | ||
Medicare spending ($1,000) | ||||||
Community-dwelling | NH | |||||
No SFC | 32.2 | 24.7 | ||||
SCF | 20.7*** | 22.5 | ||||
Hospital death (%) | ||||||
Community-dwelling | NH | |||||
No SFC | 31.8 | 20.6 | ||||
SFC | 13.9*** | 14.6** | ||||
Life sustaining treatment (%) | ||||||
Community-dwelling | NH | |||||
No SFC | 19.8 | 11.6 | ||||
SFC | 10.6 | 9.8 | ||||
ICU use (%) | ||||||
Community-dwelling | NH | |||||
No SFC | 19.6 | 10.8 | ||||
SFC | 10.2*** | 7.1 | ||||
Difference in results of AD and no AD not significant except where **/*** P value ** < 0.05, ***p < 0.01 | ||||||
Silveira 2010 et al. [40] USA | Retrospective study which controlled for confounding variables. Data from 3746 participants in HRS Study who died between 2000 and 2006. Study exit interview (after death) by knowledgeable informant (KI) – a relative most commonly as adult child | Age 60 years and over, died 2000–2006, 46 % had cognitive impairment prior to death (but not dementia specific) as stated by KI | Comparison of end-of-life care as stated by KI in post-mortem interview with those that had and those that didn’t have a written SFC or Power of Attorney (PoA). | REGRESSION: Adjusted odds ratio and (95 % confidence interval) for presence versus absence of a living will or a PoAa | ||
SFC | PoA | |||||
Multiple logistic regression. Adjustments made for socio-demographic and clinical characteristics. 42.5 % required decision-making at end of life, 70 % of whom lacked capacity, 67.6 % of whom had SFC. 83 % who requested limited care and 97 % who requested comfort care received care consistent with preferences | Hospital death | 0.71 (0.47, 1.07) | 0.72 (0.55, 0.93)a | |||
All care | 0.33 (0.19, 0.56)a | 0.54 (0.34, 0.86)a | ||||
Limited Care | 1.79 (1.28, 2.50)a | 1.18 (0.75, 1.85) | ||||
Comfort Care | 2.59 (1.06, 6.31)a | 2.01 (0.89, 4.52) | ||||
All care is care under any circumstances to prolong life, Limited care is care in certain circumstances, this is as opposed to all care possible in order to prolong life, Comfort care is comfortable and pain-free while forgoing extensive measures to prolong life. | ||||||
aDifference statistically significant | ||||||
Vandervoort 2012 et al. [41] Belgium | Retrospective study which controls for confounding variables | NH resident. | Presence of a written doctors orders to withhold treatment, such as do-not-hospitalise or do-not-resuscitate, or advance patient directive (SFC), such as a “living will” as stated by nurse in post-mortem questionnaire. This questionnaire also captured care outcomes, Comparison of outcomes dependent on presence of SFC. Multivariate logistic regression model. Outcomes only on SFC presented. (The others are not relevant to this review). | REGRESSION: Adjusted odds ratio and 95 % confidence interval presented on SFC and patient directives only | ||
Study of deaths in NH of residents with dementia. All NH (594) invited to participate. Post death questionnaire completed by nurse. | Diagnosis of dementia, and severity, as stated by nurse. | Symptoms in the last week of life using Edmonton Symptom Assessment Scale | ||||
Died in 2-month study period in 2006. 72 % female, 78 % 80 years and above. 63 % severe and 37 % moderate dementia. 764 deaths in 345 NH (58 % response rate). | Pain | 0.72 (0.37, 1.40) | ||||
Tiredness | 1.08 (0.54,2.15) | |||||
Nausea | 0.55 (0.20,1.51) | |||||
Depression | 1.42 (0.73,2.77) | |||||
Anxiety | 1.38 (0.73,2.58) | |||||
Drowsiness | 0.78 (0.40,1.51) | |||||
Appetite | 1.14 (0.55,2.40) | |||||
Shortness of breath | 1.19 (0.63, 2.23) | |||||
QOL last week of life | 1.14 (0.58,2.24) | |||||
Mildness of death | 1.70 (0.70, 4.12) | |||||
Death in hospital or palliative care unit | 2.09 (0.92, 4.72) | |||||
All odds ratios not significant | ||||||
Vandervoort 2014 et al. [42] Belgium | Retrospective study which controls for confounding variables. Study of NH of residents with dementia who died within a 3-month period in 2010 (representative sample using random cluster-sampling). Post death questionnaire completed by nurse, GP, family member or friend & NH administrator. | Diagnosis of dementia as stated by nurse or GP. 58 % female, 84 % 80 years and above. 51 % very severe dementia, 25 % severe dementia, 24 % moderate or mild dementia | Comparison of scores on the Comfort Assessment in Dying in Dementia Scale (CAD-EOLD). | REGRESSION: Mean (standard deviation) score in total and subscales of the CAD-EOLDa | ||
Relative available to complete questionnaire. 101 deaths in 69 NH (58 % response rate). | Multivariate logistic regression adjusting for age, gender, level of dementia and sentinel events. | SFC | No SFC | |||
17.5 % had a written advanced directive, 56.7 % had GP orders | Total | 31.9 (7.1) | 29.1 (6.3) | |||
Physical distress | 8.8 (2.9) | 8.2 (2.2) | ||||
Dying symptoms | 8.6 (2.4) | 8.0 (2.6) | ||||
Emotional distress | 10.2 (2.3)** | 9.0 (2.3) | ||||
Wellbeing | 6.2 (1.9) | 5.9 (1.9) | ||||
DNH | No DNH | |||||
Total | 32.8 (6.4) | 29.1 (6.4) | ||||
Physical distress | 8.8 (2.9) | 8.2 (2.2) | ||||
Dying symptoms | 9.1 (2.2) | 8.0 (2.6) | ||||
Emotional distress | 10.4 (1.8)*** | 9.0 (2.4) | ||||
Wellbeing | 6.4 (2.0) | 5.9 (1.9) | ||||
DNR | No DNR | |||||
Total | 32.9 (5.6) | 29.1 (6.5) | ||||
Physical distress | 9.3 (2.7) | 8.1 (2.7) | ||||
Dying symptoms | 8.6 (2.3) | 8.1 (2.7) | ||||
Emotional distress | 10.6 (1.7)**** | 9.0 (2.4) | ||||
Wellbeing | 6.5 (1.6) | 5.9 (1.9) | ||||
PDMA | No PDMA | |||||
Total | 29.1 (7.6) | 29.4 (6.3) | ||||
Physical symptoms | 8.2 (2.6) | 8.1 (2.3) | ||||
Dying symptoms | 7.8 (3.0) | 8.0 (2.6) | ||||
Emotional distress | 9.4 (3.3) | 9.1 (2.3) | ||||
Wellbeing | 5.6 (0.9) | 5.9 (1.9) | ||||
aAll adjusted odds ratios reported as not significant apart from: ** 2.99 (CI 1.1, 8.3) ***2.54 (0.8, 7,7), ****3.45 (CI 1.1,11). |
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Having a SFC compared to not having a SFC (OR 2.99; CI 1.1, 8.3),
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The SFC requested DNH (OR 2.54; CI 0.8, 7.7),
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The SFC requested DNR (OR 3.45; CI 1.1, 11).
Types of care or treatment
Place of death and other outcomes
Statement 9 (S9): People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs
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 | ||||
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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 |
Person with dementia quality of life, symptoms and distress
Types of care and treatment
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Assessed for pain (pre intervention 18 %, and post 60 %),
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Received non-pharmacological treatment (pre 15 %, post 34 %),
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Had a DNR order (pre 58 %, post 65 %),
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Had a DNR indicator or ‘flag’ in a chart outside of their notes (pre 45 %, post 60 %).