Dementia care navigation: A systematic review on different service types and their prevalence

Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts.


| INTRODUCTION
Across the globe, 55 million people are living with dementia, with numbers constantly rising. 1 Whilst receiving a diagnosis can be full of obstacles, 2 there are many barriers to living well with dementia and living well caring for someone with the condition.
Post-diagnostic support includes sign-posting to care services, and/or day care centres, respite care, peer-support groups, social activities, paid home care, as well as befrienders. Accessing these services helps in maintaining a good quality of life and remaining independent for longer. 3 Many people with dementia and unpaid carers do not receive the care they need however, and face different barriers in accessing and utilising care. [4][5][6] These inequalities are underpinned by geographical location, socio-economic deprivation, ethnicity, gender, and education. Living in rural areas can often entail reduced service availability or lack of adequate transport to services 7 ; and services may not be suitable to people from minority ethnic backgrounds. 4 Some services may not be subsidised, which may hinder people from lower socio-economic backgrounds from accessing these.
There are additional barriers faced by those living alone, without a carer helping with identifying and reaching services, as well as facing the new digital format of many support services. 8,9 Even if people with dementia and carers would have the suitable means and lived nearby, they may struggle accessing services due to lack of awareness. 10 Care navigation is one way in which people with dementia and unpaid carers can be linked up with suitable care and support in their locality. Dementia Care Navigators are non-clinical staff working either within a clinical or non-clinical infrastructure providing coordinated person-centred care and support for people living with dementia and unpaid carers from the moment of the dementia diagnosis.
They may provide a single point of contact who is in regular contact with the person with the condition, and the unpaid carer if available, and signpost people to suitable care and support services within their locality. These care and support services may involve both health and social care services, the latter of which can include paid home care, respite care, day care centres, and support groups. Specifically, as outlined in a report by Health Education England, 11 the following sectors are signposted to and linked up with: voluntary sector, community services, informal support networks, social services, general practice, and hospitals. It may also be possible for people with dementia and carers to contact the DCN with specific queries.
The role of the DCN can sometimes be integrated within other roles, all subject to variations in terminology and task differences.
Case management approaches to dementia care for example, as evidenced in a Cochrane systematic review, 12 is similar in that it takes place in the community, not in long-term care. It focuses on the planning and co-ordination of care however, which a DCN is not necessarily involved with-instead, a DCN can provide education and navigate people to services. In addition, case managers can be social workers or nurses for example, and thus can be clinically qualified, unlike DCNs. The limited evidence reported on showcased potential benefit of case management for dementia, although more evidence was required. 12 Other existing roles include Admiral Nurses in the UK, and through their definition already differ by involving clinically trained nurses. Admiral Nurses are a named, clinically qualified individual, who provides more indepth support, for example, with behavioural symptoms, and have been found to be very effective in providing nursing-based dementia care. 13 Dementia Care Navigators in England are not available in all areas, as recent evidence indicates. 14,15 Research from the USA highlights the different aspects of a care navigator role, including providing emotional support, tailoring education and resources, and working closely with the clinical team. 16,17 To date, there appears to be little published evidence on DCN services across England, except one report. 18 The report highlighted patient and staff satisfaction and increased signposting and access to care of the DCN service piloted in primary care settings in Gateshead and Halton. To date, one systematic review 19 has explored different system navigation programmes for dementia, albeit focusing solely on outcomes, specifically admissions to long-term care, and has not provided a comparison of different service formats and how these may influence different community-based outcomes (such as everyday functioning, well-being, and health and social care service utilisation). Therefore, with a lack of an overview, comparison, and evaluation of existing published DCN services, the aim of this novel mixedmethod systematic review was to explore existing DCN services, to provide learning for the implementation of DCNs across different regions and countries. several countries to define the scope and focus of the review and associated terms.

| Population
We defined care navigators as non-clinical staff working either within a clinical or non-clinical infrastructure providing person-centred care and support for people living with dementia and unpaid carers from the moment of the dementia diagnosis. This is a distinct role from case managers. They may provide a regular single point of contact with the person living with dementia, and the unpaid carer if available, and signpost people to suitable care and support services within their locality. These care and support services may involve both health and social care services, the latter can include paid home care, respite care, day care centres, and support groups. Specifically, as outlined in a report by Health Education England, 11 the following sectors are signposted to and linked up with: voluntary sector, community services, informal support networks, social services, General practice, and hospitals. It may also be possible for people with dementia and carers to also contact the care navigator when they have specific queries.

| Inclusion/exclusion criteria
This mixed-method systematic review focused on quantitative and qualitative studies exploring different DCN service formats and their implementation reach. We included studies evaluating DCN services, however they were termed. This was defined as (a) non-clinical staff (b) providing emotional/practical support for people with dementia and unpaid carers, (c) with people with dementia and carers able to contact them directly, and the (d) role including elements of signposting. Studies were included from any country, were published in English or German, were published since 2000, and were a peerreviewed paper. Studies were excluded if the DCN described did not meet the definition outlined or care navigators worked with groups other than dementia, were published in languages other than English or German and before 2000, and were an editorial, letter to the editor or similar non-primary data and peer-reviewed article.

| Study selection
Once duplicates were removed, two research team members (CG, AG) screened all abstracts. Where there were discrepancies in judgement, the abstracts were discussed individually until agreement was obtained. After abstract screening, both researchers read through all full text articles of to be included citations. Similarly, where discrepancies arose, these were resolved in discussion.

| Data extraction and synthesis
The following data were extracted by one research team member (CG) into a table: country, study methodology (qualitative, quantitative), DCN service details, frequency of contact and intervention, population cared for (people with dementia and/or carers), outcomes.
Data were synthesised and grouped into different categories to enable comparison between the services themselves, and their impacts on service utilisation and the population cared for (including well-being and behavioural outcomes), and synthesised narratively.
Dementia Care Navigator service components included training, mode of contact (face-to-face or remote), frequency of contact, and individual or team-based.

| Assessment of study bias
We assessed the quality of each included paper. For quantitative and qualitative studies, we used the QualSyst, 20 which includes 14 items for quantitative studies, and 10 items for qualitative studies. For mixed-methods studies, we used the Mixed Methods Appraisal tool. 21 All included studies were assessed by two research team members (HH, CG) independently. Any discrepancies between ratings were discussed jointly, and first-and final-round inter-rater agreements were calculated. Quality ratings did not influence study selection, but were used in guiding the discussion of findings and drawing conclusions.

| Public and stakeholder involvement
Two unpaid dementia carers have been involved as team members and helped synthesising the evidence and interpreting them in the context of their real-life experiences of dementia care.

GIEBEL ET AL.
Whilst some excluded studies did report on dementia care management, the care and navigation was provided by a nurse practitioner (i.e. 36 ), and thus a clinically qualified person, as opposed to a non-clinically trained professional.
Studies reported on the following DCN services (also see Table 1 for more details): the telephone-based Care Ecosystem, 17,28,[32][33][34] The Dementia Care Coordination Programme, 29 Maximising Independence at Home (MIND), 31,35 and Partners in Dementia Care for veterans with dementia and their family carers. [23][24][25] Studies also reported on a service for those from a Latin American background 26 and care coordinator assistants. 30 All service formats were similar in their approach and only varied to some degrees in terms of how care was delivered, whether the DCN was integrated into a wider team, the population group (some focused on ethnic minority dyads only).
Given the large number of papers reporting on the same DCN service, the following findings refer to a synthesis of each service, unless different papers reported varied results.

| Service delivery mode
Dementia Care Navigator services varied between providing inperson support only, 29 remote support only via telephone and/or email/post, 17 or a mixture. 23,30 Whilst Bass et al. 23 provided both remote and in-person support as part of their "Partners in Dementia" programme for veterans, the service was predominantly provided via telephone or email, with rare in-person meetings. There were no details as to whether the MIND DCN service 35 was provided in person only or has remote components of support as well. Some studies compared the effects of different types of service delivery. 26

| Training and roles of the Dementia Care Navigators
The roles of the DCNs were very similar across the different services, also because they were part of the inclusion criteria and thus restricted to services run by non-clinical professionals, who did not require to have a degree or other professional qualification. Some studies noted the pre-requirements of DCNs, which were not academically focused, but concerning their interpersonal skills and/or experiences of working with people with dementia and unpaid carers.
Dementia Care Navigators on the Care Ecosystem 32

| Impact of care navigators on service access
Reports on the effects of DCN services on service access (including both health and social care) were primarily focusing on health care utilisation (five studies), with a more limited focus on some types of social support services. The veteran-specific service, Partners in Dementia Care, 23 showed decreases in hospital admissions and emergency department visits among those veterans with greater cognitive symptoms at 6 months (more advanced dementia), and those with more behavioural symptoms at baseline and 6 months.
However, no significant association was reported. By contrast, Possin et al. 33  MediCaid) and spending redistributed to in-home services as opposed to inpatient and institutional long-term care services (first paper). In addition, the authors also noted a delay in time to transitions from home. 31

| Quality assessments
Quality ratings for quantitative (n = 7), qualitative (n = 2) and mixedmethods studies (n = 3) are shown in Table 2, with inter-rater agreements (HH, CG) shown in Table 3. Samus et al. 31 is a protocol paper and was thus not rated. There was full inter-rater agreement for the few items on the mixed-methods studies. Quality overall was generally evaluated as good, although some quantitative studies had not included confounding variables in their analysis, whilst some were missing sufficient detail on study design and clearly stated aims.

| DISCUSSION
This systematic review is the first to compare existing published DCN services of non-clinically qualified professionals providing care navigation to people with dementia and their carers, and synthesises the evidence on different outcomes of dementia and service utilisation.
Findings therefore advance a recent review 19

| CONCLUSIONS
There is limited published evidence into the existence and impacts of The views expressed in this publication are those of the author(s) and T A B L E 3 Inter-rater agreements for first and second round of ratings for quantitative and qualitative papers.