Abbreviations
- DCM
dementia care management
- FCC
facilitated case conferencing
- QALY
quality-adjusted life-years
- QoL
quality of life
- RCT
randomized controlled trial
- WTP
willingness to pay
Key Messages
Patient navigation programs are generally community-based service delivery interventions (such as collaborative care, coordinated care, and case management) intended to enhance timely access to the diagnosis and treatment of individuals with chronic conditions, including dementia.
Overall, for coordinated care compared with usual care, clinical findings were either mixed or there were no between-group differences in terms of hospitalization, institutionalization, or nursing home admissions; quality of life; or symptoms. For coordinated care compared with usual care, there was no statistically significant between-group difference in mortality. However, there was evidence of improvement in terms of behaviour with coordinated care compared with usual care.
According to 1 economic evaluation, for patients with dementia, with the majority having no or mild cognitive impairment, collaborative dementia care management provided increased benefit (quality-adjusted life-years gained) at decreased cost.
Three guidelines were identified that provided recommendations for care coordination. One guideline recommends coordinated care for people living with dementia that is organized by a single-named health or social care professional. The second guideline recommends the use of digital technology to enhance care coordination in persons with mental illness. The third guideline recommends coordinated care for people with delirium, dementia, and depression.
Findings need to be interpreted in the light of limitations (such as lack of information in the study populations’ type of dementia, mixed findings in outcomes, and lack of information beyond 24 months of follow-up).
Context and Policy Issues
Dementia is a condition that includes a range of cognitive and behavioural symptoms that can include memory loss; problems with reasoning and communication, and change in personality; and a reduction in a person’s ability to carry out daily activities, such as shopping, washing, dressing, and cooking.1,2 The most common types of dementia are Alzheimer disease, vascular dementia, mixed dementia, dementia with Lewy bodies, and frontotemporal dementia.1,2 Dementia is a progressive condition (i.e., the symptoms gradually worsen). This progression varies from person to person and each person’s experiences may be different — people may often have some of the same general symptoms, but the degree to which these affect each person may vary.1 Dementia impacts physical, psychological, social, and economic aspects not only for the individual with dementia but also caregivers, families, and society at large.3
A WHO publication reported that, worldwide, there are approximately 50 million people living with dementia and approximately 10 million new cases are diagnosed every year.3 According to a 2012 to 2013 estimate in Canada, 402,000 seniors, or 7.1% of all people 65 years and older, were living with dementia and of these two-thirds were females.4 In Canada, approximately 76,000 new cases of dementia are diagnosed every year, which is about 14.3 new cases per 1,000 people 65 years and older.4 It is projected that by 2031, the total annual health care costs for Canadians with dementia will likely double compared to that from 2 decades earlier — from $8.3 billion to $16.6 billion.5
Individuals with dementia experience changes in behaviour, mood, memory, and physical disability, and need help in managing these challenging changes.6 Generally, people with dementia are cared for by a family member. It is often a challenge for the caregiver and the burden of caregiving can affect the caregiver’s mental and physical health. The needs of the individual with dementia and their caregivers are complex and appropriate approaches for care organization and delivery are important. Patient navigation approaches are generally community-based service delivery interventions intended to enhance timely access to the diagnosis and treatment of individuals with chronic conditions.7 Patient navigators help patients and their caregivers through the health care system and help them in understanding diagnoses, treatment options, and available resources.8 Patient navigators are the main point of contact for the patients and their caregivers.9 There is a growing interest in patient navigation approaches for organizing care for people with dementia and some suggestion that family physician and case manager collaboration may address the needs of the people with dementia and their caregivers.6
The purpose of this report is to review the clinical effectiveness and cost-effectiveness of patient navigation programs for people with dementia and, additionally, to review the evidence-based guidelines regarding patient navigation programs for people with any medical condition. This report is an upgrade from a recent CADTH Summary of Abstracts report published in November 2020.10 This report will summarize and critically appraise the relevant evidence identified from the previous report.10
Research Questions
What is the clinical utility of patient navigation programs for people with dementia?
What is the cost-effectiveness of patient navigation programs for people with dementia?
What are the evidence-based guidelines regarding the use of patient navigation services for people with any medical condition?
Methods
Literature Search Methods
A limited literature search was conducted by an information specialist on key resources including MEDLINE and CINAHL, the Cochrane Library, the University of York Centre for Reviews and Dissemination (CRD) databases, the websites of Canadian and major international health technology agencies, as well as a focused internet search. The search strategy comprised both controlled vocabulary, such as the National Library of Medicine’s MeSH (Medical Subject Headings), and keywords. The main search concepts were patient navigation and dementia. For questions 1 and 2, no filters were applied to limit the retrieval by study type. For question 3, a filter was applied to limit the retrieval to guidelines only. The search was also limited to English-language documents published between January 1, 2010 and November 16, 2020.
Selection Criteria and Methods
One reviewer screened citations and selected studies. In the first level of screening, titles and abstracts were reviewed and potentially relevant articles were retrieved and assessed for inclusion. The final selection of full-text articles was based on the inclusion criteria presented in .
Exclusion Criteria
Articles were excluded if they did not meet the selection criteria outlined in , they were duplicate publications, or were published before 2010. Systematic reviews in which all relevant studies were captured in other more recent or more comprehensive systematic reviews were excluded. Primary studies retrieved by the search were excluded if they were captured in 1 or more included systematic reviews. Guidelines with unclear methodology were also excluded.
Critical Appraisal of Individual Studies
The included publications were critically appraised by 1 reviewer using the following tools as a guide: A MeaSurement Tool to Assess systematic Reviews 2 (AMSTAR 2)11 for systematic reviews, the Downs and Black checklist12 for randomized and non-randomized studies, the Drummond checklist13 for economic evaluations, and the Appraisal of Guidelines for Research & Evaluation (AGREE) II instrument14 for guidelines. Summary scores were not calculated for the included studies; rather, the strengths and limitations of each included publication were described narratively.
Summary of Evidence
Quantity of Research Available
A total of 502 citations were identified in the literature search. Following the screening of titles and abstracts, 485 citations were excluded and 17 potentially relevant reports from the electronic search were retrieved for full-text review. Four potentially relevant publications were retrieved from the grey literature search for full-text review. Of these 21 potentially relevant articles, 10 publications were excluded for various reasons, and 11 publications met the inclusion criteria and were included in this report. These comprised 3 systematic reviews,15–17 2 randomized controlled trials (RCTs),18,19 1 non-randomized study,20 1 economic evaluation (presented in 2 publications [primary analyses21 and subgroup analyses22]), and 3 evidence-based guidelines.1,2,23
Appendix 1 presents the PRISMA24 flow chart of the study selection.
Summary of Study Characteristics
Three systematic reviews,15–17 2 RCTs,18,19 1 non-randomized study,20 1 economic evaluation (presented in 2 publications [primary analyses21 and subgroup analyses22]), and 3 evidence-based guidelines guidelines1,2,23 were included. Two systematic reviews15,16 had a broad focus and included studies on a variety of interventions for people with dementia; hence, only the subset of studies that are relevant for this current report are described in this report. For the third systematic review,17 all the included studies were relevant and included in this current report. The relevant primary studies in the included systematic reviews are listed in Appendix 5. There was some overlap in the studies included in the systematic reviews; it should therefore be noted that there is overlap of studies and that findings from the systematic reviews are not exclusive. Additional details regarding the characteristics of included publications are provided in Appendix 2 (, systematic reviews; , primary clinical studies; , economic evaluation; and , guidelines).
Study Design
Of the 3 identified systematic reviews,15–17 2 systematic reviews16,17 included meta-analyses and 1 systematic review15 reported results narratively. Two systematic reviews15,16 were published in 2020 and 1 systematic review17 was published in 2017. The number of relevant primary studies reporting on patient navigation (i.e., collaborative care and/or case management) that were included in these systematic reviews ranged between 6 and 14; these studies were RCTs.
Two RCTs18,19 and 1 non-randomized study20 were included. These studies were published in 2017.
The included economic evaluation21 was a cost-utility analysis. A public payer perspective and a time horizon of 24 months were used. It was assumed that the change in health-related quality of life was linear, which seemed appropriate considering the nature of dementia. Sensitivity analysis using a societal perspective was conducted. The authors reported that there were no conflicts of interest. Clinical and utility data were obtained from a cluster RCT that was conducted by the authors. This RCT involved predominantly patients with dementia who had mild cognitive impairment. Cost data were obtained from market prices, the Pharmaceutical Index of the Scientific Institute of allgemeine Ortskrankenkasse, and the literature
The included guidelines were from the NICE–National Institute for Health and Care Excellence (NICE)1 in the UK, the RNAO–Registered Nurses’ Association of Ontario,2 and the EPA–European Psychiatric Association.23 For the 3 included guidelines1,2,23 the guideline development group conducted - literature searches to identify evidence and had a method to grade the levels of the evidence. For 1 guideline,1 the guideline development group comprised a multidisciplinary team with experts in various relevant health-related areas, and also lay persons. For the second guideline,2 the guideline development group comprised individuals holding clinical, administrative, and academic positions in various health care organizations. The third guideline23 did not report on the guideline development group. In 2 guidelines,1,23 recommendations were formulated based on consensus; in the third guideline, the method of formulating the recommendations was unclear.
Country of Origin
Of the 3 systematic reviews,15–17 1 systematic review15 was from the US, 1 systematic review16 was from Australia, and 1 systematic review17 was from the UK. The RCTs included in these systematic reviews were conducted in various countries (Canada, the US, the UK, Germany, France, the Netherlands, Finland, Norway, Australia, and China).
Of the 3 included primary studies, the countries of the first authors were the US19,20 and Australia.18 The studies were conducted in their respective countries.
The economic evaluation21 was from Germany.
The 3 guidelines1,2,23 were from various countries: Canada,2 the UK,1 and European countries.23
Patient Population
All 3 systematic reviews15–17 reported on individuals with dementia; the number of individuals ranged between 1958 and 10,392. In 1 systematic review,15 mean ages in the included studies ranged between 68 years and 83 years, and in the other 2 systematic reviews,16,17 age was not reported. None of the systematic reviews15–17 reported the type of dementia.
One RCT18 involved 286 individuals with advanced dementia living in a nursing home; the mean age was 85 years and 60% were females. The second RCT19 involved 75 veterans with dementia; the mean age was 79 years and were mainly males (the exact proportion of female to male participants was not reported). The non-randomized study20 involved 440 individuals with dementia; the age and proportion of female participants were not presented.
The patient population considered in the economic evaluation21,22 was persons with dementia, the majority with no or mild cognitive impairment. The subgroups considered were different age groups, female and male, different comorbidity levels, different levels of impairment, and patients living alone and patients not living alone.
In 1 guideline,1 the target population was people with dementia and their caregivers and the intended users were people with dementia and those involved in the care of people with dementia. In the second guideline,2 the target population was people with delirium, dementia, or depression, and the intended users were primarily nurses providing direct clinical care to older adults. In the third guideline,23 the target population was people with mental health issues and the intended users were those involved in the care of people with mental health issues.
Interventions and Comparators
In the 3 included systematic reviews,15–17 the intervention was some form of patient navigation program (case management and/or coordinated care). Case management involved care coordinated by a single individual, and collaborative or coordinated care involved a team coordinating care. In all 3 systematic reviews,15–17 the comparator was usual care; details were not presented. Additionally, 1 systematic review17 also included alternative dementia care interventions or waiting-list controls as comparators.
The 2 RCTs18,19 and 1 non-randomized study20 compared coordinated care, or case management with usual care. One RCT18 compared case management (facilitated case conferencing [FCC]) with usual care (no particular guidance or training around the approach to care planning). For this FCC care plan, a nurse who was trained as a palliative care planning coordinator organized and implemented the care plan. The second RCT19 compared a care management plan with usual care (usual care details were not presented). The coordinated care plan was the responsibility of a care manager, who was responsible for coordinating primary and specialty care, as well as the telephone education program. The non-randomized study19,20 compared a coordinated care plan with usual care (clinical assessment and referral). The coordinated care plan comprised the usual care and in addition included service connection, psychoeducation, and support.
In the economic evaluation21,22 the intervention investigated was collaborative dementia care management and the comparator was usual care (not otherwise described).
One guideline1 considered interventions such as care planning and coordination of care, inpatient care, and pharmacological and non-pharmacological treatment. The second guideline2 considered approaches needed for nurses to assess and manage older adults. The third guideline23 considered care coordination.
Outcomes
Outcomes reported in the 3 selected systematic reviews15–17 included hospitalization,16,17 institutionalization,15,17 nursing home admission,15,16 depression,15,17 neuropsychiatric symptoms,15 quality of life (QoL),15,17 function,15,17 cognitive ability,17 and mortality.17 Follow-up times ranged between 6 months and 36 months.
The types of outcomes reported in the 3 included primary studies (2 RCTs18,19 and 1 non-randomized study20) varied. One RCT18 reported on QoL, dementia symptoms, quality of care, hospital stay, and death. The second RCT19 reported on symptoms. The non-randomized study20 reported on symptoms and behaviour. Follow-up times in the primary studies ranged between 6 months to 18 months.
The economic evaluation21,22 reported on the incremental cost-effectiveness ratio expressed as cost per quality-adjusted life-year (QALY) gained.
One guideline23 considered health-related and social outcomes (e.g., symptom severity and QoL). The second guideline1 considered outcomes such as patient and caregiver preferences; QoL; and behavioural, psychological, and depressive symptoms; and caregiver burden and depression. The third guideline2 considered outcomes such as health-related and social outcomes, and caregiver burden.
Summary of Critical Appraisal
An overview of the critical appraisal of the included publications follows. Additional details regarding the strengths and limitations of included publications are provided in Appendix 3 ( [systematic reviews], [primary clinical studies], [economic evaluation], and [guidelines]).
Systematic Reviews
In all 3 systematic reviews,15–17 the objective was stated, multiple databases were searched, article selection was described and was conducted independently by 2 reviewers, data extraction was conducted, lists of included articles were presented, and study characteristics were described. In 1 systematic review,15 it was unclear if data extraction was done in duplicate and in the other 2 systematic reviews,16,17 data extraction was done by a single reviewer, hence the potential for errors cannot be ruled out. In 1 systematic review,17 the quality of the included primary studies was rated by the authors as moderate or high. In the second systematic review,15 the strength of evidence was graded by the authors as low or insufficient. In the third systematic review,16 the authors reported for the included primary studies scores between 6 to 11, with 11 being the highest score and higher scores indicating less bias. In 1 systematic review,15 results were presented narratively; meta-analysis was not conducted because of differences in outcome measures and intervention complexity. In the remaining 2 systematic reviews,16,17 meta-analyses were conducted and seemed appropriate. In all 3 systematic reviews,15–17 it was reported that the authors had no conflicts of interest.
Randomized Controlled Trials
In the 2 RCTs,18,19 the objectives and inclusion criteria were stated; the exclusion criteria were not explicitly stated; and the population characteristics, interventions, and outcomes were described. Both studies were RCTs and the randomization procedure seemed appropriate. Neither of the studies were blinded; hence, the potential for detection and performance bias cannot be ruled out. In 1 RCT,18 sample size calculations for an end-of-life dementia outcome were conducted and the appropriate number of patients recruited; however, due to greater than expected deaths, the study was underpowered. It is therefore unclear if there would have been a statistically significant difference in outcomes between the 2 interventions compared (statistical significance was not assessed). In the second RCT,19 it was unclear if sample size calculations had been undertaken. It is therefore unclear if the study had sufficient power to detect a statistically significant difference in between-group differences for dementia-related symptoms. In 1 RCT,18 missing data for family-rated end-of-life dementia outcomes varied between 7.1% and 16.2%; hence, this could impact the findings. However, as the proportions of missing data were not reported for the 2 groups separately, the direction of impact is unclear. In the second RCT,19 34% and 16% in the intervention and control (usual care) arms, respectively, did not complete the study. This could therefore impact the findings but the direction of impact is unclear. In 1 RCT,18 the authors reported that there were no conflicts of interest. In the second RCT,19 conflicts of interest were not reported, therefore the impact, if any, is unclear.
Non-Randomized Study
In the non-randomized study,20 the objective and inclusion criteria were stated; the exclusion criteria were not explicitly stated; and the population characteristics, interventions, and outcomes were described. Participants were not randomized; hence, there is the potential for selection bias. As well, participants and investigators were not blinded; there is therefore the potential for detection and performance bias. There was a substantial proportion (> 19%) who did not complete the study and this could impact findings; the direction of impact is unclear. The authors reported that attrition was not different between the 2 arms. The conflicts of interest of the authors were not presented; its impact if any, is therefore unclear.
Economic Evaluation
In the economic evaluation,21 the objective, strategies compared, perspective taken, time horizon, and sources for clinical, utility, and cost data were reported. Incremental analyses results were reported; and cost-effectiveness acceptability curves were plotted and probabilities of the intervention being cost-effective at a specific willingness-to-pay threshold were presented. Conclusions were consistent with the results reported. The authors reported that there were no conflicts of interest. Some limitations need to be considered when interpretating the results. The clinical data were obtained from an RCT involving mostly patients with no indication of cognitive impairment or mild cognitive impairment; hence, this limits the generalizability of the findings to other levels of dementia. The time horizon was 24 months, so outcomes beyond that time frame were unknown. Health care resource utilization was retrospectively collected through interviews and therefore subject to recall bias.
Guidelines
In all 3 guidelines,1,2,23 the scope and purpose were described, the target users were mentioned, systematic literature searches were conducted to identify evidence, and the recommendations were clearly presented. The 3 guidelines were externally reviewed. The guideline development groups comprised individuals from various relevant areas and the views and preferences of the target users were sought in 2 guidelines.1,2 But this was not so in the third guideline.23 In all 3 guidelines,1,2,23 supporting evidence on which recommendations were based were presented. In 2 guidelines,1,23 recommendations were formulated based on consensus and in 1 guideline2 the method for formulating the recommendations was not presented. Two guidelines1,2 had a process for updating the guidelines and 1 guideline2,23 did not. In 1 guideline,1 the applicability of the guidelines was not specified in the document; however, according to the guideline development manual26 cited by the authors, consideration of applicability is required. In the other 2 guidelines, it was unclear if applicability was considered. In 1 guideline,1 a declaration of conflicts of interest was not presented in the guideline document; however, according to the guideline development manual26 cited by the authors, a process is in place to record and address conflicts. In the other 2 guidelines,2,23 the authors declared that they had no conflicts of interest.
Summary of Findings
The main findings from the included publications are subsequently summarized. Appendix 4 presents the main study findings and authors’ conclusions.
Clinical Utility of Patient Navigation Programs
Three systematic reviews,15–17 2 RCTs,18,19 and 1 non-randomized study20 reported on outcomes of patient navigation programs (care coordination and/or case management) compared with usual care. Case management is sometimes also referred to as coordinated care, so the terminology “coordinated care” will be used to present findings.
Hospitalization, Nursing Home Admission, or Institutionalization
There was no significant difference in hospitalization with coordinated care compared to usual care (2 systematic reviews16,17). Length of hospital stay was less with coordinated care compared with usual care, but statistical significance was not reported (1 RCT18). For coordinated care compared with usual care regarding emergency room visits, 1 systematic review15 reported that coordinated care had benefit. For coordinated care compared with usual care regarding nursing home admissions, 1 systematic review15 reported mixed findings (benefit in some studies and no difference in other studies) and 1 systematic review16 reported no statistically significant between-group differences for the multifactorial treatment and assessment, and statistically significant reduction for community care coordination. For coordinated care compared with usual care, in terms of institutionalization, 1 systematic review15 reported mixed findings and 1 systematic review17 reported no statistically significant between-group differences.
Quality of Life
For coordinated care compared with usual care, for QoL, 1 systematic review15 reported mixed findings and 1 systematic review17 and 1 RCT18 reported no statistically significant between-group difference.
Depression
For coordinated care compared with usual care, for depression, 2 systematic reviews15,17 reported no statistically significant between-group differences.
Symptoms
For coordinated care compared with usual care, regarding neuropsychiatric symptoms (assessed using the Neuropsychiatric Inventory), 1 systematic review15 reported mixed findings. One RCT19 and 1 non-randomized study20 reported no significant difference in dementia-related or neuropsychiatric symptoms, respectively, with coordinated care compared with usual care. One RCT18 reported improvement in symptom management with coordinated care compared with usual care, but statistical significance was not reported.
Behaviour
For coordinated care compared with usual care, regarding behaviour, 1 systematic review17 showed statistically significant improvement in behaviour and 1 non-randomized study20 showed a significant reduction in dementia-related behaviour.
Function and Cognition
For coordinated care compared with usual care, 1 systematic review17 showed that in function and cognition there were no statistically significant between-group differences; and 1 systematic review15 showed that in function there was no between-group difference, but the statistical significance was not reported.
Mortality
One systematic review17 reported no difference in mortality with coordinated care compared with usual care. One RCT18 reported that there was no difference in the time period to death with coordinated care compared with usual care.
Cost-Effectiveness of Patient Navigation Programs
One economic evaluation21,22 comparing dementia care management (DCM) with usual care for patients with dementia was included. For patients with dementia, with DCM there was an increased QALY ( + 0.05) and a decreased cost (−€569) compared with usual care; i.e., DCM dominated usual care. For several subgroup analyses (age, female sex, living situation, deficits in daily living activities, different levels of cognitive deficits, different comorbidities) DCM was either dominant or cost-effective relative to usual care. The probability of DCM being cost-effective was 88% at a willingness-to-pay (WTP) threshold of €40,000 per QALY gained. The probabilities of DCM being cost-effective at a WTP of €40,000 per QALY gained, for the various subgroups, were 96% and 26% for patients living alone and patients not living alone, respectively; 87% and 48% for those aged ≥ 80 years and aged < 80 years, respectively; 96% and 16% in females and males, respectively; 97% and 16% for high and low deficit in daily activities, respectively; and 96% and 26% for high and low levels of comorbidities, respectively.
Guidelines
Three relevant guidelines1,2,23 were included. One guideline23 recommends the use of digital technology such as electronic health records to improve care coordination in persons with mental illness (recommendation grade C/D based on level 1 evidence; i.e., weak [details in ]). It also recommends providing components of case management to persons with mental illness after discharge from inpatient treatment (recommendation grade C based on level 3 evidence; i.e., weak [details in ]). A second guideline1 recommends, in the care of persons with dementia, providing a single-named health or social care professional who should be responsible for care coordination to ensure that information can be transferred between different settings, to maximize continuity and consistency, and to ensure relevant information is shared and recorded in the person’s care plan (recommendation: strong, based on moderate-level evidence). The third guideline2 recommends ensuring that “relevant information and care planning for older adults with delirium, dementia, and depression is communicated and coordinated over the course of treatment and during care transitions” (p. 91)2 (strength of recommendation not presented).
Limitations
Findings from the systematic reviews and primary studies were mixed for most outcomes and so definitive conclusions cannot be made. There was either considerable variability in what comprised coordinated care among the studies, or details were not available. The level of dementia was not always reported. Long-term effects are not known, as the follow-up times were generally less than 24 months. The majority of the studies were conducted in the US or Europe; therefore, generalizability of the findings to the Canadian context is unclear. However, there may be some similarities, as the majority of studies were conducted in developed countries.
The economic evaluation was based on a clinical data from a single study that involved people with dementia, the majority with no or mild cognitive impairment. The generalizability of the findings to a broader patient population is therefore limited. Furthermore, this was conducted in Germany and so the applicability to the Canadian context is unclear.
Conclusions and Implications for Decision- or Policy-Making
Three systematic reviews,15–17 2 RCTs,18,19 1 non-randomized study,20 1 economic evaluation (presented in 2 publications [primary analyses21 and subgroup analyses22]), and 3 evidence-based guidelines guidelines1,2,23 were included.
Three systematic reviews,15–17 2 RCTs,18,19 and 1 non-randomized study20 reported on the clinical utility of patient navigation programs (coordinated care) for the care of people with dementia. Overall, for coordinated care compared with usual care, findings were either mixed (i.e., in the systematic reviews, some studies showed a benefit and some showed no benefit) or there were no between-group differences in hospitalization, institutionalization, or nursing home admissions (3 systematic reviews15–17); QoL (2 systematic reviews15,16 and 1 RCT18); and symptoms (1 systematic review,15 1 RCT,19 and 1 non-randomized study20). For coordinated care compared with usual care, there were no statistically significant between-group differences in depression (2 systematic reviews15,17) and mortality (1 systematic review17 and 1 RCT18). There was improvement in behaviour with coordinated care compared with usual care (1 systematic review17 and 1 non-randomized study20). Details of patient characteristics were not always reported; it is possible that variation in patient characteristics could have contributed to mixed findings.
According to 1 economic evaluation for patients with dementia, compared with usual care, collaborative DCM was dominant; i.e., provided increased benefit (QALYs) and decreased cost. The probability of DCM being cost-effective was 88% at a WTP of €40,000 per QALY gained. This analysis was based on clinical data from a single RCT in which the majority of patients had no or mild cognitive impairment. It is possible, therefore, that the findings may not apply for a broader patient population.
Three guidelines1,2,23 were identified that reported on care coordination for people with dementia. One guideline1 recommends for the care of persons with dementia and the provision of a single named health or social care professional who should be responsible for the various aspects of care coordination (moderate evidence, strong recommendation). The second guideline23 recommends the use of digital technology to enhance care coordination in persons with mental illness (evidence level: 1; recommendation grade: C/D). The third guideline2 recommends coordinated care for people with delirium, dementia, and depression.
Findings need to be interpreted in the light of limitations reported.
As individuals with dementia have a variety of symptoms, providing care and support is very complex. Several factors such as implementation issues, health care resources required, and accessibility and training requirements need to be considered. Care programs may need to be adjusted to individual patient needs. Further research on the types of patient navigation programs that may be best suited to specific types and levels of dementia would provide additional insights into care management.
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Appendix 4. Main Study Findings and Authors’ Conclusions
Summary of Findings of Included Systematic Reviews
Butler et al. (2020),15 US
Main study findings
Outcomes with (1) case management and (2) collaborative care for individuals with dementia
Outcomes with case management compared to usual care
QoL
(1 randomized controlled trial [RCT], 102 individuals with dementia)
No between-group difference (1 RCT, P = not significant)
Strength of evidence: insufficient
Neuropsychiatry Inventory
(2 RCTs, 194 individuals with dementia)
Benefit (1 RCT, P < 0.01)
No between-group difference (1 RCT, P = not significant)
Strength of evidence: insufficient
Depression
(1 RCT, 102 individuals with dementia)
No benefit (1 RCT. P = not significant)
Strength of evidence: insufficient
Institutionalization rate
(2 RCTs, 192 individuals with dementia)
Benefit (1 RCT, P < 0.01)
No between-group difference (1 RCT, P = not significant)
Strength of evidence: insufficient
Collaborative care compared to usual care
QoL
(4 RCTs; 1,746 individuals with dementia)
Benefit (2 RCTs)
No between-group difference (2 RCTs)
Strength of evidence: low
Depression
(1 RCT, 152 individuals with dementia)
No between-group difference (1 RCT)
Strength of evidence: insufficient
Function
(2 RCT, 560 individuals with dementia)
No between-group difference (2 RCTs)
Strength of evidence: insufficient
Nursing home placement
(3 RCTs, 794 individuals with dementia)
Benefit found at 1.6 years but not at 2 years (1 RCT)
No between-group difference (2 RCTs)
Strength of evidence: insufficient
Authors’ conclusions
Case management compared to usual care
“Evidence was insufficient to draw conclusions about the effect of case management for persons living with dementia and their caregivers.” (p. 85)
15
Collaborative care
“Collaborative care models (i.e., Care Ecosystems or discrete adaptations of the ACCESS [Alzheimers Disease Coordinated Care for San Diego Seniors] models) may improve persons living with dementia quality of life. (low-strength evidence) This improvement may be very small to small, or it may be larger but concentrated in some not yet identified subgroup of people.
Collaborative care models (i.e., discrete adaptations of the ACCESS model) may improve system-level markers, including guideline-based quality indicators and reduction in emergency department visits. (low-strength evidence)
Evidence was insufficient to draw conclusions about all other outcomes for both persons living with dementia and caregiver/partner.” (p. 93)
15
Lee et al. (2020),16 Australia
Main study findings
Outcomes with (1) community care coordination and (2) multifactorial assessment and treatment clinics/services for individuals with dementia:
Outcomes with community care coordination compared with usual care
Rate of nursing home admission (2 RCTs): effect size (ES), 0.66; 95% confidence interval (CI), 0.45 to 0.97 (statistically significant reduction with community care coordination); heterogeneity, I2 = 0%
Outcomes with multifactorial assessment and treatment clinics/services compared with usual care
Risk of hospital admission (2 RCTs): ES, 1.29; 95% CI, 0.67 to 2.51 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Risk of nursing home admission (2 RCTs): ES, 2.83; 95% CI, 0.85 to 9.46 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Rate (%) of nursing home admission (2 RCTs): ES, 1.95; 95% CI, 0.71 to 1.41 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Authors’ conclusion
“The meta-analyses conducted in this review were mainly the combined results of two or three studies of an intervention. Therefore, caution needs to be taken in using these results. Current evidence suggests that policy-makers and service providers of home and community care programmes may consider using community care coordination to target a reduction in nursing home admission rate in people with dementia.” (p. 1428)16
Backhouse et al. (2017),17 UK
Main study findings
Outcomes with community-based care coordinating interventions for individuals with dementia:
Community-based care coordinating interventions compared with control (usual care, standard care, alternative dementia care interventions or waiting-list controls)
Hospitalization (6 RCTs): odds ratio (OR), 0.89; 95% CI, 0.64 to 1.24 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Institutionalization (9 RCTs): OR, 0.60; 95% CI, 0.32 to 1.11 (no statistically significant between-group difference); heterogeneity, I2 = 48%
Mortality (9 RCTs): OR, 0.97; 95% CI, 0.81 to 1.16 (no statistically significant between-group difference); heterogeneity, I2 = 0%
QoL (3 RCTs): OR, 0.09; 95% CI, −0.09 to 0.27 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Cognition (4 RCTs): OR, −0.09; 95% CI, −0.29 to 0.11 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Function (3 RCTs): OR, −0.08; 95% CI, −0.30 to 0.14 (no statistically significant between-group difference); heterogeneity, I2 = 0%
Depression (3 RCTs): OR, 0.60; 95% CI, −1.08 to 2.27 (no statistically significant between-group difference); heterogeneity, I2 = 66%
Behaviour (4 RCTs): OR, −9.52; 95% CI, −18.05 to −1.00 (statistically significant improvement with coordinated care compared to control); heterogeneity, I2 = 88%
Authors’ conclusions
“The results of our review have shown that coordinating interventions have some potential for positive impact on selected outcome measures, but the evidence is inconsistent.
“The differences across models of coordinating interventions in dementia care are substantial, and this has made it difficult to identify what should be considered core components. However, with the rising prevalence of dementia, it is likely that complex interventions will be necessary to provide high quality and effective care for patients, and facilitate collaboration of health, social and third sector services. Furthermore, although there are challenges to the implementation of coordinating interventions, addressing those and incorporating more stakeholder preferences may produce more consistent results and increase the likelihood of success.” (p. 9 of 10)17
Summary of Findings of Included Randomized Controlled Trials
Agar et al. (2017),18 Australia
Main study findings
Outcomes with facilitate case conferencing (FCC) compared with usual care (UC), for individuals with advanced dementia:
Family-rated end-of-life dementia (EOLD) care scores with respect to the individuals with advanced dementia who died.
CAD-EOLD care (mean ± SD): 34.7 ± 5.9 for FCC and 35.5 ± 5.9 for UC; higher scores indicate more comfort
Symptom management-EOLD care (mean ± SD): 29.0 ± 9.5 for FCC, 31.7 ± 7.4 for UC; higher scores indicate lower symptom frequency
Satisfaction with care-EOLD care (mean ± SD): 31.0 ± 5.3 for FCC, 30.3 ± 4.2 for UC; higher scores indicate greater satisfaction
Nurse-rated EOLD care scores (mean ± SD) for the individuals with advanced dementia who died
CAD-EOLD care (mean ± SD): 32.1 ± 6.1 for FCC and 33.3 ± 5.7 for UC; higher scores indicate more comfort
Symptom management-EOLD care (mean ± SD): 22.4 ± 9.6 for FCC and 23.2 ± 8.3 for UC; higher scores indicate lower symptom frequency
Quality of life (QoL)-based generalized linear mixed models, with FCC and UC compared
Care in the last month of life
Medication changes: 94% for FCC, 75% for UC, (P < 0.01)
Non-pharmacologic management: 85% for FCC and 68% for UC, (P < 0.05)
At least 1 hospital admission (median): 19% for FCC and 18% for UC, (P = not reported)
Hospital length of stay: 2 for FCC and 5 for UC (P = not reported); unit of length of stay was not specified
Emergency department presentation without hospital admission: 9% for FCC and 10% for UC (P = not reported)
Input from health professionals: 59% for FCC and 60% for UC (P = not reported)
Death
Authors’ conclusion
“This study is one of the few RCTs of palliative care interventions in nursing homes worldwide, and appears to be the first to test efficacy of facilitated family case conferencing for people with advanced dementia. The study’s primary endpoint of quality of EOL care was underpowered and did not show evidence of effect. In spite of these limitations, a systematic approach to facilitating a palliative approach and skills enhancement drove improvements in care. Given the growing burden of dementia globally, these data will be formative in interventions aimed to improving palliative care in nursing homes in the future.” (p. 12–13)18
Mavandadi et al. (2017), US19
Main study findings
Outcomes with care management compared with usual care for patients with dementia:
There was very little reported on patient outcomes. The main focus of this study was caregiver outcomes. “Caregiver” is not a relevant population for this current report; therefore findings pertaining to mainly the patients are presented here.
It was mentioned that, for care management compared to usual care, no significant between-group differences were found in caregiver burden or patients’ dementia-related symptoms. Additional details of patient outcomes were not presented.
Authors’ conclusion
“Findings suggest that CGs of veterans with dementia may benefit from a telephone-delivered, care management program in improving CG-related outcomes. Further research of care management program for caregivers of veterans with dementia in addressing barriers to care and reducing caregiver burden is warranted. These findings highlight the potential for such programs as adjuncts to dementia care offered in primary care practices. (p. 1)19
Summary of Findings of Included Non-Randomized Study
Mavandadi et al. (2017),20 US
Main study findings
Findings (from a non-randomized study) for care management program (enhanced caregiver service) compared with usual care (CAR) for patients with dementia:
There was very little reported on patient outcomes. The main focus of this study was caregiver outcomes. “Caregiver” is not a relevant population for this current report; therefore findings pertaining mainly to the patients are presented here.
Longitudinal mixed-effects analyses suggested no significant time x intervention group interaction effect (P = 0.94) in neuropsychiatric symptoms (based on Neuropsychiatric Inventory Questionnaire) in the full sample over time (i.e., baseline, 3-month, and 6-month follow-up).
However, for a subset of caregivers (N = 116 in the enhanced caregiver service arm), revised memory and behaviour problems checklist data were available, which showed there was a statistically significant reduction in frequency of dementia-related behaviours (P = 0.03)
Authors’ conclusion
“A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and care-recipient-related outcomes.” (p. 1019)20
Summary of Findings of Included Economic Evaluation
Michalowsky et al. (2019),21 and Radke et al. (2020),22 Germany
Main study findings
Comparison of dementia care management (DCM) (intervention) with usual care (control) for care of individuals with dementia:
Primary analyses21
For persons living with dementia who are not living alone:
Incremental cost (€) (mean [standard error; SE]): 1,799 (3,020)
Incremental quality-adjusted life-year (QALY) (mean [SE]): 0.067 (0.06)
Incremental cost per QALY gained: €26,851 per QALY
For PWD who are living alone:
Incremental cost (€) (mean [SE]): −3,642 (3,938)
Incremental QALY (mean [SE]): 0.034 (0.06)
Incremental cost per QALY gained: DCM dominates
For all PWD (complete case analysis):
Incremental cost (€) (mean [SE]): −569 (24,91)
Incremental QALY (mean [SE]): 0.049 (0.04)
Incremental cost per QALY gained: DCM dominates
Considering a societal perspective (i.e., including informal care and QALYs of the caregivers), the incremental cost (€) was −351 and the incremental QALY was 0.06; therefore still in favour of DCM and demonstrating that DCM dominates usual care
Probabilities of DMC being cost-effective at a WTP €40,000 per QALY gained (based on the cost-effectiveness acceptability curves):
For all persons living with dementia (the complete case), the probability was 88%
For the persons living with dementia who were living alone, the probability was 96%
For the persons living with dementia who were not living alone, the probability was 26%
Subgroup analyses22
Incremental cost-effectiveness ratio (ICER – cost per QALY gained) values for DCM compared with usual care, according to different patient characteristics (such as age, sex, living situation, cognitive ability, function, and comorbidities)
Age:
- ♦
Age < 80 years, ICER = €35,145 per QALY gained
- ♦
Age ≥ 80 years, ICER = −€95,282 per QALY gained; DCM dominates
Sex:
- ♦
Female, ICER = −€199,639 per QALY gained; DCM dominates
- ♦
Male, ICER = €71,173 per QALY gained
Living situation:
- ♦
Living alone, ICER = −€107,118 per QALY gained; DCM dominates
- ♦
Not living alone, ICER = €26,851 per QALY gained
Deficits in daily living activities (B − ADL):
- ♦
None, ICER = €20,414 per QALY gained
- ♦
Mild, ICER = −€50,528 per QALY gained; DCM dominates
- ♦
High, ICER = €21,836 per QALY gained; DCM dominates
Cognitive deficits (Mini-Mental State Examination):
- ♦
No indication, ICER = −€37,313 per QALY gained (incremental cost with DCM compared to usual care was €5,485 and the corresponding incremental benefit with DCM was −0.147; i.e., usual care has less cost and more benefit); usual care dominates
- ♦
Mild, ICER = −€5,945 per QALY gained; DCM dominates
- ♦
Moderate to severe, ICER = −€54,647/ per QALY gained; DCM dominates
Comorbidity (Charleston Comorbidity Index):
- ♦
Low, ICER = −€39,520 per QALY gained (i.e., with usual care, less cost and more benefit compared with DCM); usual care dominates
- ♦
High, ICER = −€104,451 per QALY gained; DCM dominates
- ♦
Very high, ICER = €26,694 per QALY gained
Probabilities of DMC being cost-effective at a WTP €40,000 per QALY gained for the various subgroups (based on the cost-effectiveness acceptability curves):
For subgroup: age < 80 years, probability was 48%
For subgroup: age ≥ 80 years, probability was 87%
For subgroup: females, probability was 96%
For subgroup: males, probability was 16%%
For subgroup: living alone, probability was 96%
For subgroup: not living alone, probability was 26%
For subgroup: high deficit in daily living activities (Bayer Activities of Daily Living Scale), probability was 97%
For subgroup: low deficit in daily living activities (Bayer Activities of Daily Living Scale), probability was 16%
For subgroup: with moderate cognitive deficits (Mini-Mental State Examination), probability was 100%
For subgroup: with no cognitive deficits (Mini-Mental State Examination), probability was 3%
For subgroup: high comorbidity, probability was 96%
For subgroup: low comorbidity, probability was 26%
Authors’ conclusions
Primary analyses21
“DCM is likely to be a cost-effective strategy in treating dementia and thus beneficial for public health-care payers and patients, especially for those living alone.” (p. 1296)
21
Subgroup analyses22
“Patient characteristics significantly affect the cost-effectiveness. Females, patients living alone, patients with a high comorbidity, and those being moderately cognitively and functionally impaired benefit most from DCM. For those subgroups, healthcare payers could gain the highest cost savings and the highest effects on QALYs when DCM will be implemented.” (p. 449)
22
Summary of Recommendations in Included Guidelines
European Psychiatric Association (2020),23 Europe
Recommendations, supporting evidence, quality of evidence, and strength of recommendations
National Institute for Health and Care Excellence (2018),1 UK
Recommendations, supporting evidence, quality of evidence, and strength of recommendations
Recommendations:
Care coordination
“Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care.” (p. 157)
1
“Named professionals should:
arrange an initial assessment of the person’s needs, which should be face to face, if possible
provide information about available services and how to access them
involve the person’s family members or carers (as appropriate) in support and decision-making
give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005
ensure that people are aware of their rights to and the availability of local advocacy services, and if appropriate to the immediate situation an independent mental capacity advocate
develop a care and support plan” (p.157)
1
“When developing care and support plans and advance care and support plans, request consent to transfer these to different care settings as needed.” (p.157)
1“Service providers should ensure that information (such as care and support plans and advance care and support plans) can be easily transferred between different care settings (for example home, inpatient, community and residential care).” (p.157)
1“Staff delivering care and support should maximise continuity and consistency of care. Ensure that relevant information is shared and recorded in the person’s care and support plan.” (p.157)
1“Service providers should design services to be accessible to as many people living with dementia as possible, including:
people who do not have a carer or whose carer cannot support them on their own
people who do not have access to affordable transport, or find transport difficult to use
people who have responsibilities (such as work, children or being a carer themselves)
people with learning disabilities, sensory impairment (such as sight or hearing loss) or physical disabilities
people who may be less likely to access health and social care services, such as people from black, Asian and minority ethnic groups.“(p.158)
1
Supporting evidence was obtained from systematic reviews conducted.
“Moderate-quality evidence from up to 8 RCTs containing 2,474 people living with dementia found improvements in quality of life and rates of entry into long stay care for the person living with dementia and carer burden for people offered case management versus usual care, but could not differentiate cognition, depressive symptoms or behavioural and psychological symptoms of dementia for the person living with dementia, or carer depressive symptoms or quality of life.” (p. 151)
1Qualitative evidence was also considered. Case managers were thought to be good at identifying needs and providing support (moderate confidence). Caregivers of people with dementia expected case managers to provide information regarding dementia and available services (moderate confidence). Face-to-face and telephone contact were both considered acceptable; however, face-to-face contact was the preferred choice, as it provided more opportunity for relationship-building (moderate confidence).
Quality of evidence: the term “should” is used in the recommendation statement when the recommendation is strong, based on the certainty of the evidence.
Level of evidence: moderate
Registered Nurses’ Association of Ontario (2016),2 Canada
Recommendations, supporting evidence, quality of evidence, and strength of recommendations
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