CADTH Health Technology Review

Patient Navigation Programs for People With Dementia

Rapid Review

Authors: Srabani Banerjee, Charlene Argáez

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

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

  1. What is the clinical utility of patient navigation programs for people with dementia?

  2. What is the cost-effectiveness of patient navigation programs for people with dementia?

  3. 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 Table 1.

Table 1: Selection Criteria

Criteria

Description

Population

Q1 and Q2: People with dementia (all types)

Q3: People with any medical condition

Intervention

Patient navigation programs or services (i.e., care coordination programs)

Comparator

Q1 and Q2: Usual care; no coordination of care with patient navigation programs

Q3: Not applicable

Outcomes

Q1: Clinical utility (e.g., quality of life, time to diagnosis and treatment, disease severity, cognitive impairment [e.g., MMSE scores], mortality)

Q2: Cost-effectiveness (e.g., cost per quality-adjusted life-year gained)

Q3: Recommendations regarding best practices (e.g., appropriate patient populations, implementation considerations, appropriate clinical settings)

Study Designs

HTAs, SRs, RCTs, non-randomized studies, economic evaluations, and evidence-based guidelines

HTA = health technology assessment; MMSE = Mini-Mental State Examination; RCT = randomized controlled trial; SR = systematic review.

Exclusion Criteria

Articles were excluded if they did not meet the selection criteria outlined in Table 1, 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 (Table 2, systematic reviews; Table 3, primary clinical studies; Table 4, economic evaluation; Table 5 and Table 6, 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 (Table 7 [systematic reviews], Table 8 [primary clinical studies], Table 9 [economic evaluation], and Table 10 [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 Table 6]). 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 Table 5]). 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.

References

1.National Institute for Health Care and Excellence. Dementia: assessment, management and support for people living with dementia and their carers. (NICE guideline 97) 2018; https://www.nice.org.uk/guidance/ng97/evidence/full-guideline-pdf-4852695709 Accessed 2021 Jan 22.

2.Delerium, dementia, and depression in older adults: assessment and care. Toronto (ON): Registered Nurses' Association of Ontario; 2016: https://rnao.ca/sites/rnao-ca/files/bpg/RNAO_Delirium_Dementia_Depression_Older_Adults_Assessment_and_Care.pdf. Accessed 2021 Jan 22.

3.World Health Organization. Dementia. 2020; https://www.who.int/news-room/fact-sheets/detail/dementia. Accessed 2021 Jan 25.

4.Canadian Institute for Health Information. How dementia impacts Canadians. 2018; https://www.cihi.ca/en/dementia-in-canada/how-dementia-impacts-canadians. Accessed 2021 Jan 25.

5.Dementia in Canada, including Alzheimer's disease. Ottawa (ON): Public Health Agency of Canada; 2017: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-highlights-canadian-chronic-disease-surveillance.html. Accessed 2021 Jan 25.

6.Khanassov V, Vedel I. Family physician-case manager collaboration and needs of patients with dementia and their caregivers: a systematic mixed studies review. Ann Fam Med. 2016;14(2):166-177. PubMed

7.Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer. 2011;117(15 Suppl):3539-3542. PubMed

8.YorkU. Patient navigator certificate. https://hlln.info.yorku.ca/fundamentals-of-patient-navigation/. Accessed 2021 Feb 3.

9.University of California San Francisco. Building a care ecosystem. 2021; https://memory.ucsf.edu/research-trials/professional/care-ecosystem. Accessed 2021 Feb 3.

10.Patient navigation programs for people with dementia: clinical utility, cost-effectiveness, and guidelines. (CADTH Rapid response report: summary of abstracts). Ottawa (ON): CADTH; 2020: https://www.cadth.ca/sites/default/files/pdf/htis/2020/RB1530%20Patient%20Navigation%20Final.pdf Accessed 2020 Jan 6.

11.Shea BJ, Reeves BC, Wells G, et al. AMSTAR 2: a critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both. BMJ. 2017;358:j4008. PubMed

12.Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377-384. PubMed

13.Higgins JPT, Green S, editors. Figure 15.5.a: Drummond checklist (Drummond 1996). Cochrane handbook for systematic reviews of interventions. London (GB): The Cochrane Collaboration; 2011: http://handbook-5-1.cochrane.org/chapter_15/figure_15_5_a_drummond_checklist_drummond_1996.htm. Accessed 2021 Jan 22.

14.Agree Next Steps Consortium. The AGREE II Instrument. Hamilton (ON): AGREE Enterprise; 2017: https://www.agreetrust.org/wp-content/uploads/2017/12/AGREE-II-Users-Manual-and-23-item-Instrument-2009-Update-2017.pdf. Accessed 2021 Jan 22.

15.Minnesota Evidence-based Practice Center, Butler M, Gaugler JE, et al. Care interventions for people living with dementia and their caregivers (Comparative effectiveness review, no. 231). Rockville (MD): Agency for Healthcare Research and Quality; 2020: https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/cer-231-dementia-interventions-final.pdf. Accessed 2021 Jan 5.

16.Lee DA, Tirlea L, Haines TP. Non-pharmacological interventions to prevent hospital or nursing home admissions among community-dwelling older people with dementia: a systematic review and meta-analysis. Health Soc Care Community. 2020;28(5):1408-1429. PubMed

17.Backhouse A, Ukoumunne OC, Richards DA, McCabe R, Watkins R, Dickens C. The effectiveness of community-based coordinating interventions in dementia care: a meta-analysis and subgroup analysis of intervention components. BMC Health Serv Res. 2017;17(1):717. PubMed

18.Agar M, Luckett T, Luscombe G, et al. Effects of facilitated family case conferencing for advanced dementia: a cluster randomised clinical trial. PLoS ONE. 2017;12(8):e0181020. PubMed

19.Mavandadi S, Wright EM, Graydon MM, Oslin DW, Wray LO. A randomized pilot trial of a telephone-based collaborative care management program for caregivers of individuals with dementia. Psychol Serv. 2017;14(1):102-111. PubMed

20.Mavandadi S, Wray LO, DiFilippo S, Streim J, Oslin D. Evaluation of a telephone-delivered, community-based collaborative care management program for caregivers of older adults with dementia. Am J Geriatr Psychiatry. 2017;25(9):1019-1028. PubMed

21.Michalowsky B, Xie F, Eichler T, et al. Cost-effectiveness of a collaborative dementia care management-results of a cluster-randomized controlled trial. Alzheimer's dement. 2019;15(10):1296-1308. PubMed

22.Radke A, Michalowsky B, Thyrian JR, Eichler T, Xie F, Hoffmann W. Who benefits most from collaborative dementia care from a patient and payer perspective? A subgroup cost-effectiveness analysis. J Alzheimers Dis. 2020;74(2):449-462. PubMed

23.Gaebel W, Kerst A, Janssen B, et al. EPA guidance on the quality of mental health services: a systematic meta-review and update of recommendations focusing on care coordination. Eur Psychiatry. 2020;63(1):e75. PubMed

24.Liberati A, Altman DG, Tetzlaff J, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. J Clin Epidemiol. 2009;62(10):e1-e34. PubMed

25.Ramsey S, Willke R, Briggs A, et al. Good research practices for cost-effectiveness analysis alongside clinical trials: the ISPOR RCT-CEA Task Force report. Value Health. 2005;8(5):521-533. PubMed

26.National Institute for Health Care and Excellence. Developing NICE guidelines: the manual. 2014; https://www.nice.org.uk/process/pmg20/resources/developing-nice-guidelines-the-manual-pdf-72286708700869 Accessed 2021 Jan 22.

27.Guyatt GH, Oxman AD, Vist GE, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336(7650):924-926. PubMed

Appendix 1: Selection of Included Studies

Figure 1: Selection of Included Studies

502 citations were identified, 485 were excluded, while 17 electronic literature and 4 grey literature potentially relevant full-text reports were retrieved for scrutiny. In total, 11 reports are included in the review. Appendix 1: Characteristics of Included Publications

Appendix 2: Characteristics of Included Publications

Table 2: Characteristics of Included Systematic Reviews

Study citation, country, funding source

Study designs and numbers of primary studies included

Population characteristics

Intervention and comparator(s)

Clinical outcomes, length of follow-up

Butler et al.(2020)15

US

Funding: sponsored by the Agency for Healthcare Research and Quality

Systematic review

Number of primary studies included: 627, of which 10 RCTs (the studies were conducted in the US [4], Germany [1], Finland [2], Norway [1], and China [2]) were relevant for this current report. These studies were published between 2001 and 2019.

Setting: community, except nursing home for 1 RCT

Inclusion criteria: adults with possible or diagnosed AD/ADRD

RCTs, and prospective studies with concurrent comparator arms. Only English publications due to resource limitations

Exclusion criteria: before and after studies with no comparator arm. Fewer than 10 patients in each treatment group

Aim: to assess care interventions for people with dementia and their caregivers that link to benefits

Individuals living with dementia

The authors categorized different care options. The 2 options (case management and collaborative care) that are relevant for the current review are presented here.

Case management (3 RCTs)

N = 294

Age (range for mean) (years): 68 to 79

% Female (range): 44% to 58%

Dementia type: unspecified

Collaborative care (7 RCTs)

N = 2,641

Age (range for mean) (years): 73 to 83

% Female (range): 43% to 77%

Dementia type: unspecified

Interventions: Case management: health and social services, to support individuals with dementia and their caregivers, were coordinated by case manager. The case and case manager were not reported to be part of a team-based care approach.

Collaborative care: A multidisciplinary team integrated medical and psychological approaches for health care of the individuals with dementia. The team members were at the same location or at different locations with a common hub. Support was provided to the individual with dementia and to the caregiver.

Comparator

Usual care: description not presented

Institutionalization, QoL, depression, neuropsychiatric symptoms, function, quality indicators, ER visits, nursing home placement

Follow-up: for case management, 12 to 24 months

For collaborative care, 6 to 18 months

Lee et al. (2020)16 Australia

Funding: not reported

Systematic review and meta-analysis

Number of primary studies included: 20 studies of which 6 studies (RCTs) were relevant for this current report. These RCTs were conducted in the US (2), UK (1), Australia (1), Germany (1), and France (1). These were published between 1999 to 2014.

Setting: community

Inclusion criteria: RCT and non-randomized controlled studies with a control or comparison group

Population: persons with dementia

Outcomes reported: hospital and nursing home admissions

QoL of persons with dementia and their caregivers

Exclusion criteria: mean age less than 65 years, persons in nursing home or hospital, non-English publications

Aim: to assess non-pharmacological interventions that can minimize hospital or nursing home admissions for people with dementia

Individuals with dementia

N = 1,958

Age (in years): not reported (65 or older according to the inclusion criteria)

% Female: not reported.

Dementia type: not reported

Interventions: coordinated care

Multifactorial assessment and treatment clinics/services

Comparator: Usual care

Hospital admission, nursing home admission

Follow-up: 9 to 12 months

Backhouse et al. (2017)17 UK

Funding: funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula

Systematic review and meta-analysis

Number of primary studies included: 14 RCTs. These RCTs were conducted in the US (6), China (3), Finland (2), Canada (1), the Netherlands (1), and India (1). The RCTs were published between 2000 and 2014

Setting: community

Inclusion: RCTs

Population: individuals with diagnosis of dementia, no restrictions on age or gender. No restrictions on language of publication

Exclusion: non-randomized experimental studies, studies that focused only on informal caregivers

Aim: to assess effectiveness of community-based coordinating interventions for people with dementia

Individuals with dementia

N = 10,392

Age (years): not reported (no restrictions according to the inclusion criteria)

% Female: not reported.

Dementia type: not reported

Interventions: interventions delivered by a single identified professional who was responsible for the provision and management of care (i.e., planning, facilitating and/or coordinating care)

Comparators: usual care, standard community treatment, alternative dementia care interventions or waiting-list controls

Hospitalization, institutionalization, mortality, QoL, cognition, function, behaviour, and depression

Follow-up (months): 12 to 36

AD = Alzheimer disease; ADRD = Alzheimer disease–related dementia; ER = emergency room; QoL = quality of life; RCT = randomized controlled trial.

Table 3: Characteristics of Included Primary Clinical Studies

Study citation, country, funding source

Study design

Population characteristics

Intervention and comparator(s)

Clinical outcomes, length of follow-up

Randomized controlled trials

Agar et al. (2017)18 Australia

Funding: not reported

RCT cluster design, single-blinding. The nursing homes were randomized. The staff, residents, and families at each nursing home were blinded. Participating investigators, project managers, and nursing home managers were not blinded because of the system-level nature of the intervention.

Setting: nursing home (20 nursing homes in 2 major Australian cities)

Inclusion criteria: nursing home designated as facility providing intensive level of care and having ≥ 100 beds and with ≥ 50% residents with dementia

Exclusion criteria: not specified

Aim: to assess the efficacy of FCC in improving EOL care for individuals with advanced dementia in nursing homes

Individuals with advanced dementia living in nursing homes

N = 286 (156 in FCC [in 10 nursing homes]; 130 in UC [in 10 nursing homes) — of these, 131 (67 in FCC, 64 in UC) were included in the EOLD analysis. Those alive throughout the study (89 in FCC, and 66 in UC) were excluded from the analysis.

Age (years) (mean ± SD): 85.3 ± 8.0

% Female: 60%

Dementia level: advanced

Intervention: FCC. A registered nurse was trained as a palliative care planning coordinator who worked 2 days per week or equivalent. Responsibilities included identifying residents with advanced dementia who are likely to benefit; organizing and documenting case conferences involving family, multidisciplinary nursing home staff, and external health professionals; developing and overseeing implementation of care plans; and training nursing and direct care staff.

Comparator: UC. No staff education, training or support was provided. There were no restrictions in terms of approach to care planning and decision-making.

Family-rated EOLD scores; nurse-rated EOLD scores, pharmacological management, non-pharmacological management, hospital admissions and emergency department admissions

Study period: 18 months

Mavandadi et al. 2017 (US)19

Funding: not reported

RCT (pilot trial)

Setting: primary care (p. 1)

Inclusion criteria: age ≥ 18 years, patient living in the community, and patient had a dementia diagnosis

Exclusion criteria: not specified

Aim: to assess the extent to which care management is associated with changes in caregiver and patient outcomes compared with usual care

Note: only details of the population (patients with dementia) relevant for the current report are described here.

Older veterans with dementia

N = 75 (38 in CM, 37 in UC)

Age (years) (mean ± SD):78.95 ± 8.96

% Female: not reported (it was reported that patients were mainly male veterans)

Dementia level (severity of symptoms based on NPI-Q score) (mean ± SD): 7.62 ± 5.32 (higher score indicates more severity)

Intervention: CM; individualized dementia CM, which is delivered by either nurse or social work–trained clinicians. The care manager coordinated connection to VA and community programs. The care manager also helped to coordinate scheduling in primary and specialty care.

It also included a telephone education program.

Comparator: UC; patients continued to receive standard care through the VA. Caregivers were provided information about VA and community resources for patients with dementia and their caregivers.

Symptom change (using NPI-Q, RMBPC)

Follow-up: 6 months

Non-randomized studies

Mavandadi et al. (2017)20 US

Funding: funded by the state of Pennsylvania’s PACE/PACENET Program, Pennsylvania

Department of Aging, Harrisburg, PA. The work was further supported by US Department of Veterans Affairs VISN4 MIRECC and VA Center for Integrated Healthcare. The funding source and the U.S. Department of Veterans Affairs had no role in the study design, methods, subject recruitment, data collection, analysis, or preparation of this article

Non-randomized study, prospective

Setting: general community

Inclusion criteria: care recipients aged ≥ 65 years, living in a non-institutionalized setting, screened positive for dementia; had at least 1 prescription of an antidepressant, anxiolytic, or antipsychotic in the past 6 months; caregiver age ≥ 18 years

Exclusion criteria: not specified

Aim: to assess efficacy of telephone-delivered community-based collaborative care management program for caregivers and care recipients (older adults with dementia)

Note: only details of the population (patients with dementia) relevant for the current report are described here.

Individuals with dementia

N = 440 (150 in ECS, 290 in CAR)

Age (years): not reported (age ≥ 65 years was mentioned in the inclusion criteria)

% Female: not reported

Dementia level: not reported

Intervention: ECS is a comprehensive dementia management program. It comprised all of the services provided to the CAR group, in addition to service connection, psychoeducation, and support delivered by BHPs. All interviews and care management activities were via phone.

Comparator: CAR. This comprised a baseline clinical interview followed by a brief summary regarding case recipient’s symptoms and functional status, and reported service and resource needs, which were then sent to the prescribing clinicians for treatment planning, clinical assessment, and referral

Behaviour and symptom change (using NPIQ, RMBPC)

Follow-up: 6 months

BHPs = behavioural health providers; CAR = clinical assessment and referral; CM = care management; ECS = enhanced caregiver services; EOL = end-of-life; EOLD = end-of-life dementia; FCC = facilitated case conferencing; MIRECC = Mental Illness Research Education and Clinical Center; NPIQ = Neuropsychiatric Inventory Questionnaire; PACE/PACENET = Pharmaceutical Assistance Contract for the Elderly/ Pharmaceutical Assistance Contract for the Elderly Needs Enhancement Tier; RCT = randomized controlled trial; RMBPC = Revised Memory and Behavior Problems Checklist; UC = usual care; VA = Veterans Affair; VA CIH = VA Center for Integrated Healthcare.

Table 4: Characteristics of Included Economic Evaluation

Study citation country, funding source

Type of analysis, time horizon, perspective

Population characteristics

Intervention and comparator(s)

Approach

Source of clinical, cost, and utility data used in analysis

Main assumptions

Michalowsky et al. (2019)21 Germany

Funding: German research foundation

Cost-utility analysis

Time horizon: 24 months

Perspective: public payer perspective (excluding informal care and caregiver QALYs)

Discounting: 5% per year

Individuals with dementia, majority with no or mild cognitive impairment, and their caregivers

Intervention: community-based collaborative DCM to support PWD and their caregivers; targeted at the individual participant level delivered in the person’s home by a nurse with dementia-specific training. The nurse developed the care plan based on discussion with treating GP and implemented it with cooperation from the GP and various health care and social services

Comparator: usual care

The economic evaluation was conducted alongside the clinical trial (cluster RCT)

As there were differences in sample characteristics and dependency of observation to cluster (GPs), incremental cost and QALYs were estimated using linear regression models. To handle uncertainty in ICER, a nonparametric bootstrapping was used creating 1,000 resamples that were stratified for the cluster and group distribution. The probability of DCM being cost-effective was calculated using these resamples and different WTP thresholds. The authors reported that methods used for this analysis were consistent with those of the published guidelines for undertaking economic evaluations25

Sensitivity analyses were conducted

Clinical and utility data were from a cluster RCT (Delphi trial conducted in Germany involving patients who were mildly cognitively impaired)

Preference weights used to calculate health utilities were obtained from a sample of the general population in the UK

Cost data were obtained from market prices, the pharmaceuti-cal index of the scientific research institute of the AOK, and the literature

A linear change in HRQoL was assumed, considering the nature of dementia; i.e., increasing cognitive and functional deficits that affect HRQoL

AOK = Allgemeine Ortskrankenkasse; DCM = dementia care management; GP = general practitioner; HRQoL = health-related quality of life; ICER = incremental cost-effectiveness ratio; PWD = person with dementia; QALY = quality-adjusted life-year; RCT = randomized controlled trial; WTP = willingness to pay.

Table 5: Characteristics of Included Guidelines

Intended users, target population

Intervention and practice considered

Major outcomes considered

Evidence collection, selection, and synthesis

Evidence quality assessment

Recommendations development and evaluation

Guideline validation

EPA (2020),23 Europe

Intended users: those involved in the care of people with mental health issues and organizers of mental health services

Target population: people with mental health issues

Care coordination

Symptom change, quality of life, and service-related outcomes

Systematic literature search was conducted to identify relevant evidence. The authors reported that they conducted a systematic meta-review, which included a systematic overview of systematic reviews, meta-analyses, and evidence-based guidelines

Evidence was graded on a 4-point scale

Recommendations were graded based on criteria reported in a European Psychiatric Association publication, with some modifications

GDG composition was not presented

Recommendations were formulated by consensus

There was a method for grading the recommendations

Externally reviewed

NICE (2018),1 UK

Intended users: People with dementia and those involved in the care of people with dementia

Target population: people with dementia and their caregivers

Dementia diagnosis, care planning and coordination of care, inpatient care, pharmacological and non-pharmacological treatment, staff training, palliative care, and support for informal caregivers

Behavioural symptoms, cognitive impairment, health service usage, hospitalization, caregiver depression, caregiver satisfaction, and resource use and cost

Systematic literature search was conducted to identify relevant evidence (both quantitative and qualitative)

Meta-analysis was conducted where possible or evidence was summarized narratively. This guideline was developed using a rigorous process (NICE manual)26

Evidence quality was assessed using GRADE

GDG comprised a multidisciplinary team (such as psychiatrist, psychologist, nurse, occupational therapist, consultant, and health economist), social worker, and lay persons

Recommendations were developed by consensus

There was a method for grading the recommendations

Externally reviewed

RNAO (2016),2 Canada

Intended users: primarily for nurses providing direct clinical care to older adults. May also be used by other members of the interprofessional team who collaborate with nurse to provide comprehensive care, educators, administrators, and policy-makers

Target population: people with delirium, dementia, or depression

Approaches needed for nurses to assess and manage older adults

Nurse practice

Hospitalization, behavioural and psychological symptoms, depression management, communication, and care planning

Systematic literature search was conducted to identify relevant evidence (from relevant peer-reviewed literature and guidelines; additional details regarding study designs that were eligible were not specified)

Evidence quality was graded using a method based on that of SIGN and a published framework for evaluating evidence

The guideline program team and the expert panel included individuals holding clinical, administrative, and academic positions in various health care organizations and practice areas

Method for formulating the recommendations was unclear

It was unclear if there was a method for grading recommendations

Externally reviewed

EPA = European Psychiatric Association; GDG = guideline development group; GRADE = Grading of Recommendations Assessment, Development and Evaluations; NICE = National Institute for Health and Care Excellence; RNAO = Registered Nurses’ Association of Ontario; SIGN = Scottish Intercollegiate Guidelines Network.

Table 6: Ratings Used in the Guidelines

Ratings for the evidence and associated recommendation

EPA (2020),23 Europe

Grade of evidence:

  • Grade 1: “High-quality meta-analyses, systematic reviews of RCTs, or evidence-based clinical guideline with a very low risk of bias (AMSTAR 2 ratings 100–80%).” (p. 4)23

  • Grade 2: “Well-conducted meta-analyses, systematic reviews, or evidence-based clinical guidelines with a low risk of bias (AMSTAR 2 ratings 80–60%).” (p. 4)23

  • Grade 3: “Meta-analyses, systematic reviews, or clinical guidelines with an increased risk of bias (AMSTAR 2 ratings 60–40%).” (p. 4)23

  • Grade 4: “Meta-analyses, systematic reviews, or clinical guidelines with a considerable risk of bias (AMSTAR 2 ratings 40–0%).”(p. 4)23

Grade of recommendations:

  • Grade A: “At least one meta-analysis, systematic review, or evidence-based clinical guideline with clear findings, rated as 1 and directly applicable to the target population.” (p. 4)23

  • Grade B: “At least one meta-analysis, systematic review, or evidence-based clinical guideline rated as 2 aggregating a body of evidence from primary studies that are directly applicable to the target population and demonstrate overall consistency of results.” (p. 4)23

  • Grade C: “At least one meta-analysis, systematic review, or evidence-based clinical guideline rated as 3 or 4 aggregating a body of evidence that demonstrates overall consistency of results or evidence from meta-analysis, systematic review, or evidence-based clinical guideline rated as 1 or 2 but reporting limited evidence or less consistent findings regarding the respective recommendation (e.g., a significant overall trend but substantial heterogeneity). (p. 4)23

  • Grade D: “Good practice recommendations based on the clinical experience of the guidance development group (expert consensus.” (p. 4)23

NICE (2018),1 UK

NICE,1 used the GRADE methodology for assessing evidence quality.

GRADE methodology:27

  • “High quality — Further research is very unlikely to change our confidence in the estimate of effect

  • Moderate quality — Further research is likely to have an important impact on our confidence in the estimate of effect and may change the estimate

  • Low quality — Further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate

  • Very low quality — Any estimate of effect is very uncertain” (p. 926)27

RNAO (2016),2 Canada

RNAO, 20162

  • Level of evidence Ia: “Evidence obtained from meta-analysisG or systematic reviews of randomized controlled trialsG, and/or synthesis of multiple studies primarily of quantitative research.” (p. 9)2

  • Level of evidence Ib: “Evidence obtained from at least one randomized controlled trial.” (p. 9)2

  • Level of evidence IIa: “Evidence obtained from at least one well-designed controlled studyG without randomization.” (p. 9)2

  • Level of evidence IIb: “Evidence obtained from at least one other type of well-designed quasi-experimental studyG, without randomization.” (p. 9)2

  • Level of evidence III: “Synthesis of multiple studies primarily of qualitative researchG.” (p. 9)2

  • Level of evidence IV: “Evidence obtained from well-designed non-experimental observational studies, such as analytical studiesG or descriptive studiesG, and/or qualitative studies.” (p. 9)2

  • Level of evidence V: “Evidence obtained from expert opinion or committee reports, and/or clinical experiences of respected authorities.” (p. 9)2

AMSTAR = A MeaSurement Tool to Assess systematic Reviews; EPA = European Psychiatric Association; GRADE = Grading of Recommendations Assessment, Development and Evaluations; NICE = National Institute for Health and Care Excellence; RCT = randomized controlled trial; RNAO = Registered Nurses’ Association of Ontario.

Appendix 3: Critical Appraisal of Included Publications

Table 7: Strengths and Limitations of Systematic Reviews Using AMSTAR 211

Strengths

Limitations

Butler et al. (2020),15 US

  • The objective was clearly stated.

  • Multiple databases (MEDLINE, Embase, PsychInfo, CINAHL, and CENTRAL) were searched through October 2019. Additionally, a grey literature search was conducted.

  • The study selection was described and a flow chart was presented.

  • A list of included studies was provided.

  • A list of excluded studies was provided.

  • Article selection was done by 2 reviewers.

  • A quality assessment was conducted. The strength of evidence was graded as high, moderate, low, and insufficient (based on 5 factors: limitations, consistency, directness, precision, and reporting bias). The authors judged the strengths of evidence as low or insufficient.

  • Study characteristics were described.

  • A narrative synthesis was presented. “Because differences in outcome measures and intervention complexity prohibited combining outcomes for a statistical meta-analysis, we present summary findings as brief statements of how many studies reported statistically significant benefit or no difference between the intervention and the comparator.” (p. 23)15

  • It was mentioned that the authors had no affiliations or financial involvements that conflicted with the contents of the report.

  • Unclear if data extraction was done by 2 reviewers.

  • Unclear if quality assessment was done by 2 reviewers.

  • Unclear if publication bias was investigated.

Lee et al. (2020),16 Australia

  • The objective was stated.

  • Multiple databases (MEDLINE, Embase, PsychInfo, Emcare CENTRAL, CINAHL Plus, and Scopus) were searched up to December 2019. Also, grey literature was searched and authors were contacted for details.

  • Study selection was described and a flow chart was presented.

  • A list of included studies was provided.

  • Article selection was done by 2 reviewers.

  • Data extraction was done by 1 reviewer and discussed with another reviewer, if needed.

  • Quality assessment was conducted by 1 reviewer based on the Physiotherapy Evidence Database (PEDro) scale. On a scale of 11, the scores for the studies ranged between 6 and 11; higher scores indicate less bias.

  • Characteristics of the included studies were presented.

  • Meta-analyses were conducted.

  • The authors declared that there were no conflicts of interest.

  • A list of excluded studies was not provided.

  • Unclear if publication bias was investigated.

Backhouse et al. (2017),17 UK

  • The objective was clearly stated

  • Multiple data bases (MEDLINE, Embase, PsychInfo, EMBASE, Cochrane library were searched from inception to June 2015 and further updated to April 2017. Also, additional resources were searched.

  • Study selection was described and a flow chart was presented.

  • A list of included studies was provided.

  • Article selection was done independently by 2 reviewers.

  • Data extraction was done by 1 reviewer.

  • Quality assessment was done independently by 2 reviewers using the Critical Appraisal Skills Programme. The authors rated the quality of the studies as moderate or high.

  • Characteristics of the included studies were presented.

  • Meta-analyses were conducted.

  • Publication bias was explored using Funnel plots. “Institutionalisation and mortality were the only 2 outcome measures to show a positive-result publication bias, the results of neither were statistically significant in the meta-analysis of overall intervention effect.” (p. 5)17

  • The authors declared that they had no competing interests.

  • A list of excluded studies was not provided.

Table 8: Strengths and Limitations of Clinical Studies Using the Downs and Black Checklist12

Strengths

Limitations

Randomized controlled trial

Agar et al. (2017)18 Australia

  • The objective was clearly stated.

  • The inclusion criteria were stated; exclusion criteria were not explicitly mentioned.

  • Patient characteristics, intervention, and outcomes were described.

  • The randomized study and the randomization method appeared appropriate (computer-generated allocation sequence); it was single-blinded (staff and residents and families at each nursing home were blinded).

  • Sample size calculation was conducted and the appropriate number of patients were included. Although the appropriate number of patients were recruited, the lower than estimated death rate resulted in a lower than target sample size to detect the primary outcome (quality of end-of-life care).

  • Patient characteristics, intervention, and outcomes were described.

  • Missing items varied between 7.1% and 16.2% for family-related EOLD scores; and between 1.6% and 8.7% for nurse-related EOLD scores.

  • An ITT analysis was conducted.

  • P values were reported

  • The authors declared that there were no competing interests.

  • Although extent of missing items were reported, it was not reported separately for the FCC and UC; hence, its impact was unclear

  • The study was underpowered for the primary outcome

Mavandadi et al. (2017), US19

  • The objective was clearly stated.

  • The inclusion criteria were stated; the exclusion criteria were not explicitly mentioned.

  • Patient characteristics, intervention, and outcomes were described.

  • The randomized study and the randomization method appeared appropriate (using a random number generator). This was a pilot study.

  • In the CM arm, 25 of 38 (66%), and in the UC arm, 31 of 37 (84%), completed the study.

  • Adjusted ITT analysis was conducted

  • Study does not appear to have been blinded

  • Unclear if sample size calculation was conducted

  • Conflicts of interest not reported

Non-randomized study

Mavandadi et al. (2017),20 US

  • The objective was clearly stated.

  • The inclusion criteria were stated; the exclusion criteria were not explicitly mentioned.

  • Patient characteristics, intervention, and outcomes were described.

  • In the intervention arm (ECS), the proportion of caregivers and patients who completed baseline assessment and at least 1 follow-up interview was 80.7% in the intervention arm (ECS) and 75.3% in the control (CAR) arm. The authors reported that there were no differences in attrition rates across the intervention and control programs.

  • Sample size calculations were conducted based on the primary outcome (caregiver burden and caregiver health).

  • Mixed-effects linear regression analyses were conducted.

  • Study was not a randomized controlled study

  • Conflicts of interest not reported

CAR = clinical assessment and referral; CM = care management; ECS = enhanced caregiver services; EOLD = end-of-life dementia; FCC = facilitated case conferencing; ITT intent-to-treat; UC = usual care.

Table 9: Strengths and Limitations of Economic Evaluation Using the Drummond Checklist13

Strengths

Limitations

Michalowsky et al. (2019),21 Germany

  • The objectives were stated.

  • The strategies compared were stated.

  • The time horizon (lifetime) and perspective (societal) were stated.

  • Clinical and utility data sources were stated.

  • Cost data sources were stated.

  • Discounting was reported.

  • The analysis method was presented.

  • The incremental analysis was reported.

  • Sensitivity analyses were conducted.

  • Conclusions were consistent with the results reported.

  • Authors reported that there were no conflicts of interest

  • The analysis was conducted using data from a cluster randomized controlled trial involving mildly cognitively impaired patients; hence, the generalizability of the findings presented are limited.

  • Preference weights used to calculate health utilities were taken from a sample of the general population in the UK. This could introduce bias in the health utilities because of different country-specific preferences.

  • Health care resource utilization was retrospectively collected through interviews and therefore subject to recall bias.

Table 10: Strengths and Limitations of Guidelines Using AGREE II14

Item

EPA (2020),23 Europe

NICE (2018),1 UK

RNAO (2016),2 Canada

Domain 1: Scope and Purpose

1. The overall objective(s) of the guideline is (are) specifically described.

Yes

Yes

Yes

2. The health question(s) covered by the guideline is (are) specifically described.

Yes

Yes

Yes

3. The population (patients, public, and so forth.) to whom the guideline is meant to apply is specifically described.

Yes

Yes

Yes

Domain 2: Stakeholder Involvement

4. The guideline development group includes individuals from all relevant professional groups.

Unclear

Yes

Yes

5. The views and preferences of the target population (patients, public, and so forth) have been sought.

Unclear

Yes

Yes (stakeholder input was sought)

6. The target users of the guideline are clearly defined.

Yes

Yes

Yes

Domain 3: Rigour of Development

7. Systematic methods were used to search for evidence.

Yes

Yes

Yes

8. The criteria for selecting the evidence are clearly described.

Yes

Yes

Unclear

9. The strengths and limitations of the body of evidence are clearly described.

Unclear

Yes

Yes

10. The methods for formulating the recommendations are clearly described.

Yes

Yes

Unclear

11. The health benefits, side effects, and risks have been considered in formulating the recommendations.

Unclear

Yes

Unclear

12. There is an explicit link between the recommendations and the supporting evidence.

Yes

Yes

Yes

13. The guideline has been externally reviewed by experts before its publication.

Yes

Yes

Yes

14. A procedure for updating the guideline is provided.

no

Yes

Yes

Domain 4: Clarity of Presentation

15. The recommendations are specific and unambiguous.

Yes

Yes

Yes

16. The different options for management of the condition or health issue are clearly presented.

Yes

Yes

Yes

17. Key recommendations are easily identifiable.

Yes

Yes

Yes

Domain 5: Applicability

18. The guideline describes facilitators and barriers to its application.

No

Uncleara

No

19. The guideline provides advice and/or tools on how the recommendations can be put into practice.

No

Uncleara

To some extent (mentions implementation strategies)

20. The potential resource implications of applying the recommendations have been considered.

No

Uncleara

No

21. The guideline presents monitoring and/or auditing criteria.

No

Uncleara

No

Domain 6: Editorial Independence

22. The views of the funding body have not influenced the content of the guideline.

For the research, no specific grant from any funding agency, commercial, or not-for-profit organization were received. The authors reported that they had no conflicts of interest.

Uncleara

The authors reported that no limiting conflicts were identified.

23. Competing interests of guideline development group members have been recorded and addressed.

The process of recording and addressing conflicts of interest were not presented.

Uncleara

It was reported that conflicts of interest were recorded and there was a process in place to address conflicts.

AGREE II = Appraisal of Guidelines for Research and Evaluation II; EPA = European Psychiatric Association; NICE = National Institute for Health and Care Excellence; RNAO = Registered Nurses’ Association of Ontario.

aUnclear = It was not explicitly mentioned in the guideline report, but it was mentioned that the guidelines were developed according to the NICE guideline development manual,26 which requires that applicability is considered and editorial independence is ascertained.

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

Authors’ conclusions

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:

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:

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:

Nurse-rated EOLD care scores (mean ± SD) for the individuals with advanced dementia who died

Quality of life (QoL)-based generalized linear mixed models, with FCC and UC compared

Care in the last month of life

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 under-powered 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:

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:

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:

Authors’ conclusions

Primary analyses21

Subgroup analyses22

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

Registered Nurses’ Association of Ontario (2016),2 Canada

Recommendations, supporting evidence, quality of evidence, and strength of recommendations

Appendix 5: Overlap Between Included Systematic Reviews

Table 11: Overlap in Relevant Primary Studies Between Included Systematic Reviews

Primary study citation

Butler et al. (2020),15 US

Lee et al. (2020),16 Australia

Backhouse et al. (2017),17 UK

Bass et al. Alzheimer research and Therapy. 2014, 69 (9)

No

No

Yes

Bass et al. The Gerontologist. 2003, 43 (1): 73-85

No

No

Yes

Callahan et al. JAMA. 2006, 295 (18): 2148-57

Yes

Yes

Yes

Challis et al. Journal of Geriatric Psychiatr., 2002, 17(4), 315-325

No

Yes

No

Chien et al. J Adv Nurs. 2011, 67(4): 774-87

Yes

No

Yes

Chien et al. Psychiatr Serv. 2008, 59(4): 433-6

No

No

Yes

Chodosh et al. Journal of Aging and Health. 2015, 27(5):864-93

Yes

No

No

Chu et al. Am J Alzheimers Dis. Other Dement. 2000, 15(5): 284-90

No

No

Yes

Dias et al. PLoSOne. 2008, 4(6): e2333

No

No

Yes

Eloniemi-Sulkava et al. J Am Geriatr Soc. 2009, 57:2200-8

Yes

No

Yes

Eloniemi-Sulkava et al. J Am Geriatr Soc. 2001, 49: 1282-7

Yes

No

Yes

Jansen et al. Int J Nurs Stud. 2011, 48: 933-43

No

No

Yes

Kohler et al. Current Alzheimer Research. 2004, 11(6), 538-548

No

Yes

No

Lam et al. Int J Geriatr Psychiatry. 2010, 25: 395-402

Yes

No

Yes

Lichtwarck et al. American Journal of Geriatric Psychiatry. 2018, 26(1):25-38

No

No

No

Logiudice et al. International Journal of Geriatric Psychiatry, 14(8), 626-632

No

Yes

No

Newcomer et al. Health Care Financ Rev. 1999, 20(4): 45-65

No

No

Yes

Nourhashemi et al. BMJ. 2010,340. doi:10.1136/bmj.c2466

No

Yes

No

Possin et al. JAMA Internal Medicine. 2019, 179(12):1658-1667

Yes

No

No

Samus et al. Am J Geriatr Psychitr.2014, 22(4): 398-414

No

Yes

Yes

Thyrian et al. JAMA Psychiatry. 2017, 74(10):996-1004

Yes

No

No

Vichrey et al. Ann Intern Med. 2006, 145(10): 713-26

Yes

No

Yes

No = the study was not included in the systematic review; Yes = the study was included in the systematic review.