The search strategy identified 1875 references (Figure 1). After removal of duplicates 1799 abstracts were examined for relevance and 68 full text references were obtained for full text screening. Hand-searching of references lists of included articles yielded an additional three articles. In total 71 articles were assessed for eligibility, of which 13 articles were selected for data extraction and analysis.
Fifty-eight studies assessed for eligibility were excluded. Eighteen were grey literature, 17 did not include the primary health care nurse, six were not available in full text, seven papers were removed as they were multiple publications reporting on the same intervention, five were published outside of the time-frame for inclusion, three were duplicate studies [19-21] and two studies [22,23] were excluded as the outcomes had not been published. Bryans et al., [22] did not publish the outcomes of a survey study on primary health care nurses and dementia care due to significant loss to follow-up. For similar reasons, Perry et al., [23] did not publish the outcomes of the dementia training programme on diagnostic assessment and management of dementia by primary care nurses.
Study characteristics
Of the 13 included studies, three were RCTs, three utilised survey questionnaires, four were mixed-method studies with one of these a Rand-Delphi study, and three were qualitative studies using interviews.
The studies were conducted in the Netherlands (n=1), Germany (n=1), United States of America (n=1), The United Kingdom (n=5), Australia (n=4) and one was conducted across the Netherlands and the United Kingdom (n=1).
All the studies were published between 2000 and 2019.
Four studies [21,24-26] evaluated dementia care management in primary health care. Exploring dementia care knowledge and attitudes of primary health care practitioners was the focus of three studies [11,12,3]. Two studies [27,28] explored participant experiences of dementia care delivery in primary health care and one study [29] explored service use and reported unmet needs of people with dementia and support person(s). Investigating the implications of early recognition of dementia for the roles of the primary health care team was the focus of one study [30] The authors of one study [31] developed quality indicators for dementia care in primary health care settings and one study investigated the value and useability of an online dementia management tool for health professionals [32]. The study characteristics are described in Tables 5, 6, 7 and 8.
Randomised Controlled Trials
Three studies utilised an RCT [21,25,26] to investigate the impact of collaborative care on quality of life for people with dementia and their caregivers. The study by Van den Dungen et al., [25] also included an evaluation of family practitioner training on diagnosis of mild cognitive impairment.
In all three models of care the nurse was the care manager who worked in collaboration with the primary care doctor. All care management models followed a structured assessment and care planning protocol. Care management ranged in duration from six [26] to twelve months [21, 25]. In two studies [25,26] the care managers were registered nurses, with Van den Dungen et al., [25] specifying the nurse as a primary care nurse who acted as the study nurse. In the third study [21] the care manager was a geriatric nurse practitioner. All the nurses received dementia specific training and were integrated into the primary care team with only one care manager providing the dementia care management within the patients’ home [26].
Callahan et al., [21] and Thyrian et al., [26] reported a significant decrease in behavioural and psychological symptoms of dementia and caregiver stress with dementia care management, however, Thyrian et al., [26] reported there was no significant improvement in quality of life overall. Despite reporting that dementia care management had no impact on quality of life measures for patients or their care-givers, Van den Dungen et al.,[25] do recommend that collaborative care with nurses in primary care deserves further exploration. Authors of all three studies reported limitations in generalisability, however, Callahan et al., [21] and Thyrian et al., [26] recommend dementia care management be provided by specifically trained nurses as an effective collaborative care model and implementation in routine care could be beneficial for people living with dementia and their care-givers.
Callahan et al., [21] tested the effectiveness of a collaborative care model to improve the quality of care for patients with Alzheimer’s disease at primary care practices within two university affiliated health care systems from January 2002- August 2004 in the US. This model of care is part of the Prevent Study [20]. The study was designed to apply the shared elements of current treatment guidelines for patients with Alzheimer’s disease [21]. The essential components of the model of care were a comprehensive screening and diagnosis protocol [33], a multi-disciplinary team approach to care coordinated by a geriatric nurse practitioner and a proactive longitudinal tracking system [20]. The primary outcome measurement was the identification and treatment of behavioural and psychological symptoms of dementia, with an emphasis on non-pharmacological management.
Intervention patients received care management by an interdisciplinary team led by the nurse working with the patient’s family caregiver and integrated within primary care [20,34]. There was one nurse in each of the two study primary care practices, with each site including multiple clinics. This nurse was a geriatric nurse practitioner who had received specific training in communicating the diagnosis of Alzheimer’s disease to patients and families. In addition to training, the nurse participated in weekly support meeting with a geriatrician, geriatric psychiatrist and a psychologist who reviewed the care provided. Caregivers and patients were seen by the nurse in the primary care clinic fortnightly, then monthly for one year. At each contact caregivers completed the Memory and Behaviour Problems Checklist which activated a specific behavioural intervention protocol [20]. The nurse managed non pharmacological interventions independently and if the intervention was unsuccessful then collaborated with GP to institute drug therapy. Advice on communication skills; strategies for managing support person(s) stress; legal and financial advice; physical activity guidelines and the Alzheimer’s Association Caregiver Guide was the minimum intervention that all treatment group caregivers received included [20]. Caregivers were also invited to participate in a monthly support group with a concurrent exercise program for the person with dementia [19].
The intervention group had fewer behavioural problems and reduced support person(s) stress, but there was no significant impact on depression or function. There was no evidence that the intervention improves or worsens cognition, activities of daily living or the rate of nursing home placement.
The results of this study indicate that this type of model of care can be implemented in primary care, particularly with the involvement of geriatric advanced practice nurses, who can effectively manage the complex nature of Alzheimer’s disease. Callahan et al., [21] report that the effectiveness of the intervention depended on the key role played by the nurse. The model of care was acceptable to patients and primary care physicians [19] improving primary care efficiency. Factors important to nurses’ success included establishing good relations with primary care physician, effective communication with the primary care physician and familiarity with primary care settings [20]. The intervention strength is credited to its comprehensive and integrated approach in line with effective chronic disease management models [21]. This model of care is potentially more health care intensive as the patients receiving care management had higher cumulative doctor or nurse visits compared with usual care, however these costs may be off-set by a reduction in pharmacological management of behavioural and psychological symptoms of dementia [21].
Callahan et al., [21] describe the main limitation of the study as the inability to identify which of the subcomponents of the intervention were most effective in achieving the outcomes. The strength of the intervention was its comprehensive and integrated approach. Other identified limitations included limited generalisability as the sample size may not have provided sufficient power to detect minor changes in cognition or nursing home placement.
Van den Dungen et al., [25] conducted a 2 stage cluster RCT assessing the outcomes of education, case-finding and subsequent care on diagnosis of mild cognitive impairment (MCI) and the mental health effects of case finding and subsequent care [34].
The intervention included five hours of face-to-face family practitioner training to increase knowledge to diagnose dementia, a practice guideline and a trained PN to facilitate the diagnostic process and collaborative care. There were two study nurses covering seven participating practices. Collaborative care included the PN prioritising problems and preparing a care plan using the results of the administration of the Residential Assessment Instrument [36] and in collaboration with the individual with dementia or MCI, the caregiver and the GP.
The study outcomes were a non-significant increase in MCI and dementia diagnoses resulting from a combined educational, case finding and care intervention. Collaborative care did not seem to have impact on mental health and quality of life for study participants. The family practitioners and PNs described case-finding and the provision of collaborative care as a positive experience, however the PN did describe the process of inviting people for an assessment as time-consuming.
Limitations to the study included low response rates limiting the external validity of the study. The rates of MCI or dementia were lower than expected. The reasons for this may have included a type 2 error with a low sensitivity of the cognitive tests performed by PN. In addition, there was sub-optimal implementation of the intervention with the family practitioner not always performing further diagnostic assessments on all persons referred by the PN. The potential impact of the intervention on rate of new diagnosis may have been mitigated by these factors.
Thyrian et al., [26] tested the effectiveness of dementia care management (DCM) in the treatment and care of people with dementia living at home and on caregiver burden [37]. DCM is a collaborative care model that uses a computer-assisted program to determine a personalised array of intervention modules and subsequent success monitoring that will provide optimal treatment and care for people with dementia and support caregivers. A RCT involving 634 people with dementia was conducted with six nurses who had completed a dementia care-specific qualification to provide the DCM intervention [38]. The intervention was provided for 6 months in the homes of the people with dementia. This study found that DCM was a safe intervention significantly decreasing behavioural and psychological symptoms of dementia and care giver burden. People with dementia with DCM had an increased chance of receiving anti-dementia drug treatment. DCM significantly increased QOL for patients not living alone but did not increase QOL overall. There was no effect on the potential administration of inappropriate medication.
It was recommended that DCM provided by trained nurses was an effective collaborative care model improving patient and caregiver outcomes and should be incorporated into routine primary health care. However, the DCM qualification piloted in Dreier et al., [38] is time intensive with 35 modules over 18 months, which would not be easily accessible for all primary care nurses.
Thyrian et al., [26] describe limitations of the study including potential selection bias as screening and recruitment were part of routine care. The intervention and control groups had an uneven number of participants; the GPs in the control group had fewer patients. In addition, the GPs may have become aware of their assignment to the control or intervention group. The study was embedded into routine care resulting in high external validity.
Survey Questionnaire studies
Three studies reported survey results [11,12,29]. Manthorpe et al., [12] and Trickey et al., [11] investigated dementia knowledge and attitudes of primary health care nurses (CN), health visitors, community mental health care nurses (CMHN) and PNs in the provision of care for people living with dementia. The third study [29] explored service use and unmet needs of people with dementia recruited a decade apart.
Manthorpe et al., [12] reported all groups of primary health care nurses had similar knowledge related to the early signs and symptoms of dementia. However, PNs were less confident in providing advice and support than community mental health care nurses. In the study undertaken by Trickey et al., [11], PNs completing the Over-75 year health check were less likely than other nurse groups to take any action, other than to refer to the GP, when presented with a person living with dementia and their support person.
Gilbert et al., [29] reported that support person(s) were increasingly contacting a PN for support with less evident use of CN, health visitors and CMHN. This may in part be attributed to greater access to a PN and the changing nature of the PN role with an increased focus on chronic disease management. Support person(s) reported that they were still not getting the advice and support they needed.
Authors of all three studies identified a need to improve PN knowledge of dementia and its management. In the study by Trickey et al., [11] participants reported guidelines would be helpful to address gaps in knowledge and to standardise practice.
The survey outcomes and study limitations are described in detail below.
Manthorpe et al., [12] administered a questionnaire to 268 nurses; comprising 79 CMHNs, 153 CNs and 36 PNs, to explore whether there had different perspectives on early diagnosis of dementia and to consider the effects of any variation. These questionnaires were completed by nurses who attended one-day workshops offered on 24 occasions in 21 settings across the UK over a three month period. The workshops were open to all health practitioners who worked in the community setting and were part of a training program on early diagnosis of dementia [39].
All of the nurse groups were in regular contact with people with dementia and were able to respond to early signs of dementia and identify potential sources of support. However, both PNs and CNs felt less confident in the provision of dementia care and service co-ordination than community mental health care nurses. Once a diagnosis had been given approximately half of the PN respondents reported that they found it challenging to provide advice and support about behavioural or psychological problems. About one third of PNs found providing information about support services and obtaining support services “considerably difficult” with slightly more reporting “considerable difficulty” in the co-ordination of services. Dementia support in the community was seen by all nurse groups as a specialist function with the key worker role best fulfilled by community mental health care nurses. A limitation in drawing generalizable conclusions from this study was that the nurse participants volunteered to attend a 1-day training course on dementia in their own time. Therefore, the sample group was likely a group of interested and perhaps atypical practitioners. However, when considering the role of the PN in the provision of dementia care the authors conclude that despite PNs being in contact with the population likely to benefit from early recognition of dementia, work is needed to increase PN confidence, knowledge and skills in recognising dementia and supporting people undergoing referral or assessment.
Trickey et al., [11] utilised a postal questionnaire survey that was completed by 127 primary care nurses in the UK (a response rate of 65%) of which 71% were practice based nurses. The study aimed to examine the knowledge, attitudes and inter-professional working practices among nurses who undertake the Over-75 Check towards assessing and managing patients with symptoms of dementia. The survey also assessed the level of support for a clinical practice guideline.
The outcomes of the study revealed there was little evidence of a systematic approach within practices. Twenty-five percent of survey respondents indicated they would take no action other than to refer to a GP in response to a case vignette describing a consultation with an older couple; the wife showing signs of dementia and the husband anxious about the future. Of the remaining participants, there was a mixed response to the action they would take, with little evidence of holistic assessment and care. Just under one third reported they would make an informal or formal assessment of cognition, 5% would explore the husband’s mood and 1% would look at specific support needs for the husband. The extent of action nurses indicated they would take was dependant on their skills and perception of autonomy, with most intended action reported by highly trained nurses with more confidence and perceived autonomy. Trickey et al., [11] concluded that many professionals undertaking the Over-75 health check are not sufficiently trained to assess patients with potentially early signs of cognitive impairment. The majority of respondents recognised the need to standardise care and the need for early intervention and indicated that guidelines would be helpful in their practice to address gaps in knowledge. This was a small survey conducted in a limited geographical area which restricts drawing generalizable conclusions. Additionally, using a vignette may more correctly be exploring current practice rather than knowledge and attitudes. However, given the prevalence of PNs undertaking the Over-75 Check in General Practice it is reasonable to conclude that education to support recognition of cognitive impairment and the provision of consistent and adequate care for people with dementia is warranted.
Gilbert et al., [29] report the results of a UK study comparing service use and unmet needs by people with dementia and their support person(s) in two samples a decade apart using the same survey instrument. The participants in this study were recruited in two earlier RCTs [40,41] testing the effectiveness of the EVIDEM dementia educational intervention [41] and support person(s) accounts of their encounters with family practice [40].
Recruitment was part of an educational intervention study and those taking part in such trials are not representative of the wider community of people with dementia and their caregivers. Despite this limitation the two samples were largely similar in demographics. There were statistically significant differences in service use and unmet needs between the two samples, with a reduction in unmet need in the second sample. However, managing physical and verbal aggression remained a significant challenge. Gilbert et al., [29] report this reduction may be related to changes in service use and national policy promoting earlier recognition, improved access to treatment, specialist services and social supports and better identification and recognition of support person(s). In the second sample, the role of PNs was more evident, especially for non-spouse support person(s), and the use of CNs, CMHNs and home visitors was less apparent. It is not known if these contacts were to review dementia or were encounters for management of co-morbidities.
Despite the outcome that PNs have a more evident role in caring for people living with dementia, Gilbert et al., [29] do not elaborate on what that role may look like. The authors conclude that better understanding of the increasing role of the PN may help primary care health professionals to reduce the unmet needs among support person(s) for people with dementia.
Mixed methods
Four studies reported mixed-methods research results [3,24,31,32].
Perry et al., [31] used a RAND modified Delphi method to construct a set of quality indicators for dementia diagnosis and management in primary care in the Netherlands. PNs were involved in the selection and validation process of the quality indicators. Of the final 23 quality indicators, two explicitly describe collaboration between the GP and the PN, an area in which the authors suggest improvement is highly recommended. A further three quality indicators emphasise the importance of developing and reviewing individualised care plans. This is commonly a PN role that is established and accepted in primary care settings. Millard et al., [3] explored dementia literacy in a general practice setting. In this study two-thirds of the PNs reported a lack of dementia training. Despite this self-perceived lack of training, three-quarters of the PNs reported that the primary care doctor or nurse was the appropriate person to discuss dementia with patients. Ollerenshaw et al., [32] suggest that PNs may find an on-line dementia management support tool useful. Iliffe et al., [24] adapted a US model of primary care based case management (PREVENT) for people with dementia and tested its implementation in UK general practice. Despite case managers, patients and support person(s) reporting a positive experience and perceiving benefits of case management, the study outcomes suggested that case management does not fit easily into practice routines and that it was not substantially beneficial for patients and support person(s).
The outcomes and limitations for each of the studies outlined above are described in more detail below.
Ollerenshaw et al., [32] explored primary health care practitioner awareness and use of an online Dementia Pathways Tool [42] with surveys and Google Analytics in rural and regional western Victoria. Fifty percent of the survey respondents were PNs who reported finding the Dementia Pathways Tool useful in complementing their knowledge about dementia. This finding may suggest that PNs are interested in dementia and are seeking further information to support their practice. However, given the low survey response rate (13%) and the small sample size (n=21) it could also be concluded that PNs were not interested in, or see as relevant to their practice, the provision of dementia care. Although Google Analytics show consistent access and use of the Dementia Pathways Tool there is insufficient detail to reveal the type of user or information accessed.
Using a mixed-methodology that included questionnaires, an RCT, and computerised medical records data from 22 practices in Australia and 3 in the UK, Millard et al., [3] measured GP, PN and patient dementia related health literacy. The questionnaire study involved PNs and explored the source and adequacy of dementia knowledge. Twenty five Australian PNs and 1 English PN completed a one-page questionnaire about memory problems, dementia and its risk factors.
Results revealed that despite slightly over one third of PNs reporting that they had received dementia training, two thirds of PNs rated their dementia knowledge as inadequate. Over two thirds of patients in the waiting rooms of the 25 practices wanted to learn more about reducing the risk of dementia, with only 15% having heard about dementia from a doctor. Approximately two thirds of PNs reported that a doctor or nurse was the appropriate person to discuss dementia with patients.
A limitation of this study was a convenience sampling strategy was used to recruit PNs. The results are therefore not representative of the health literacy of the PNs in the 22 practices in Australia or the three practices in the UK.
Iliffe et al., [24] adapted a successful primary care based care management model for people with dementia from the US (the PREVENT model) and used mixed- methodology case studies to test its acceptability and feasibility in General Practice in the UK. The translation and cultural adaptation of the PREVENT model and its testing was called the CARE-DEM study.
The CARE-DEM intervention consisted of training and mentoring based on an educational needs assessment and a learning manual that could be shared between case managers and patient-carer dyads. The training and mentoring was provided by an Admiral Nurse, a dementia care specialist CN.
The CARE-DEM intervention was tested in four general practices. PNs undertook the case manager role, with one nurse in each of two practices and one social worker who undertook the case manager role across two practices. Eligible participants were people living with dementia who had a support person, were not receiving care co-ordination from specialist services and were living in the community.
The authors reported on recruitment of dyads to participate in study, number of dyad and case manager contacts, type of needs identified, dyad interviews and interviews with NHS and social care professionals and the case managers.
Feedback from the dyads and National Health Service (NHS) and social care professionals was generally positive of case management. While all case managers perceived the benefits of case management as continuity of care and flexibility in meeting needs, the PN case managers reported that there were few concrete benefits to participants. All the case managers reported time constraints as an obstacle to working with their client group however the most successful case manager was a PN. This PN who had dementia care experience had only half a day available and carried a larger case manager load compared with the social worker who worked full-time across two practices.
Despite case management offering potential benefits, this study suggested that case management does not fit into practice routines easily and that case management was not significantly beneficial to patients or caregivers. The findings of this study are consistent with the view that case managers need a recognised defined role, comprehensive clinical skills, protected time and access to multidisciplinary expertise [24].
The small scale of the study means that conclusions drawn from it must be tentative. The limitations of this study included less than expected dyad recruitment for all practices. The time constraints for the case management role of the PNs may have meant there was insufficient time to show the potential of case management. Unmet needs discrepancies between case managers and researchers with the researchers identifying more unmet needs may have impacted on the experience of the dyads.
Perry et al., [31] constructed a set of quality indicators for dementia diagnosis and management in a primary care setting used a RAND modified Delphi method (postal survey, stakeholders’ consensus meeting, scientific expert consensus meeting, and demonstration). Along with GPs and informal support person(s), 21 PNs participated in the postal survey and two PNs participated in the stakeholders’ consensus meeting. Of the final set of 23 quality indicators several indicators explicitly describe collaboration between GPs and PNs, an area in which improvement is highly recommended. One quality indicator specified that the GP be the first point of contact or delegate this task to the PN. Another quality indicator specified that GPs and PNs use the same medical record. Quality indicators are included on developing individualised care plans for each person and support person (after formal diagnosis made), with reviews every three months. However, this task was not explicitly assigned to either the GP or PN. This study showed that a PN’s positive attitude towards dementia care and collaboration was positively associated with adherence rates.
The incompleteness of the GP electronic medical record limited a quantitative assessment of feasibility of measurement and may have limited validity of adherence rates. However, in the postal survey most outcome indicators showed acceptable feasibility of measurement. Adherence rates to the quality indicators in this study were similar to those found in other studies measuring quality in primary dementia care. This suggests validity of the findings.
Qualitative studies
All three qualitative studies [27,28,30] used interviews to explore experiences of primary health care practitioners, patients and support person(s), of dementia care. Dodd et al., [27] used semi-structured face-to-face interviews to contrast study participants’ experiences of a new primary care led dementia service with existing secondary care based memory services in Bristol, UK. Dodd et al., [28] used a semi-structured face-to-face interview to investigate participant’s experiences of a new primary care led dementia service in South Gloustershire, UK. In both these studies [27,28] the nurses were seconded from secondary care dementia services, with each nurse working with a group of primary health care clinics. Patients and support person(s) reported primary care led services to be positive and there was uniform praise for the work by the memory nurse. GPs reported they valued the advisory role provided by the memory nurse. Manthorpe et al., [30] explored implications of the early recognition of dementia for inter-professional working using focus group interviews. In this study the PN was identified as the practitioner most appropriate to take on screening for dementia and monitoring, however community mental health care nurses were considered to have the skills and capacity to take on long-term and complex cases.
Dodd et al., [27] used a qualitative participatory study to contrast patient, family member and health professional experience of primary and secondary (usual) care led memory services. Data were collected through peer led interviews. Eleven of the 53 General Practices in Bristol, UK, offered primary care led dementia services. Three memory nurses from the secondary care memory service were seconded to work with the 11 pilot practices. A referral from the GP to the memory nurse was used to trigger a home visit for the purpose of providing advice to the GP on assessment and management. GPs in the participating practices attended a three hour training programme on identifying, assessing and diagnosing dementia. This programme was delivered by the GP lead for dementia and the memory clinic service manager. In the model of a primary care led dementia pathway [28] GPs no longer automatically referred all patients with suspected memory problems to secondary care for assessment. GPs were expected to take the lead in assessing, making a diagnosis and providing treatment for patients suspected of having a dementia and, if possible, a diagnosis was made in primary care. When diagnosis was unclear the GP sought advice from the memory nurses seconded to primary care. A referral to a memory clinic was made if it was a complex diagnosis.
GPs reported they valued working with the memory nurse, however the memory nurses found liaising with GPs to be cumbersome and time consuming. All participants praised the work of memory nurses in both primary and secondary care settings.
Study limitations included: a low participation rate from those patients (n=14) and support person(s) (n=15) who were invited to take part; the potential to ‘hand-pick’ participants with secondary care Memory Clinics assisting with recruitment; peer researchers lacking experience in conducting research interviews and the study team’s inability to recruit a person living with dementia to the peer panel which developed the interview topic guide. The differences in secondary care models across the country also limits the generalisability of the study’s findings to other areas.
Dodd et al., [28] investigated a primary-care led dementia service piloted in South Gloustershire, UK, during 2012 with 23 general practices participating. Unlike Dodd et al., [27] this study did not compare experiences of secondary care memory clinics. The aim of this study was to investigate how the South Gloustershire primary care memory service was experienced and understood by all those involved in the new process of assessment, diagnosis and treatment of dementia within a primary care service developed in the previous study by Dodd et al., [27]. The memory nurses were from secondary care dementia services, located centrally and provided expert consultancy to GPs around dementia medications. All the service users who were interviewed for this study had only been seen by their GP and not by memory nurses working in either primary or secondary care memory services.
The interviews revealed four main themes related to the relocation of part of the memory service from secondary care to primary care: ‘the journey’; ‘what next’; ‘the benefits and limits of primary care’; and, ‘are GPs getting it right’. Two consistently expressed concerns by all groups of participants were: lack of post-diagnostic co-ordination and GP-led or multidisciplinary assessment. The process of assessment and diagnosis was described by the GPs and memory nurses as a collaborative or multi-disciplinary exercise, but with clear boundaries between roles, with the nurse carrying out the assessment and the doctor making the final diagnosis.
Training and education was repeatedly identified as a means to develop collaborative, consistent approaches to dementia care. The memory nurses described how informal learning with experience and talking with their colleagues was particularly important in enhancing competence.
The study did not aim to be generalizable, but to generate ideas for further research. Limitations included the small sample size (n=7) and the use of peer interviewers.
Manthorpe et al., [30] conducted a focus group study with the same sample group attending a series of 24 multidisciplinary dementia workshops over 21 cities across UK over a three month period as reported in Manthorpe et al., [12] and Illiffe et al., [24]. Participants in the wider study included 247 GPs, 146 PNs, 79 CMHNs and others working in a range of hospital, residential and community settings. Four focus groups were conducted in each workshop. The multi-disciplinary focus groups comprised 20 participants which included PNs. Each group worked on a series of questions related to their work and to the design of dementia care services relevant to early recognition of and response to dementia.
Four categories of paired themes were identified; opportunistic screening versus population screening, referral and responsibility, key working and team working, and generalist versus specialist roles. Collaborative working in dementia care, particularly around early recognition, was seen as essential, with the PN identified as the practitioner most appropriate to take on routine screening for dementia in primary care. There was a contradiction between the perception that recognising dementia could be in the remit of all professionals, and the clear delegation of assessment to nurses. A perception that screening is a core skill that can be assimilated and incorporated into everyday practice by any nurse, although not necessarily by GPs, reflected the unresolved tension between opportunistic identification (which all could do) and a more systematic approach to screening, where nurses are seen by doctors as the most appropriate professional. A common theme was the need for education and training for screening. However that routine screening for dementia is controversial and not recommended due to the high rate of false positives [43]. There were concerns about the time required to provide more comprehensive dementia care in primary health care. Communication between professionals, increased requests for screening and assessment, the pressure of earlier reviews from those who enter the dementia systems at ever earlier stages and the higher expectations from older people and their families were seen to be costly and time-consuming.
The study outcomes are limited in generalisability because the sample was likely a group of interested and perhaps atypical practitioners who volunteered to attend a one day training course on dementia in their own time.
Risk of bias
The methodological quality varied across the studies (Tables 1, 2, 3 and 4). The qualitative and all but one of the mixed methods studies rated high according to the quality appraisal criteria. Two of the three RCT studies lacked allocation concealment, blinding and presented incomplete outcome data which compromised their quality. The survey studies were of mixed quality with two of the three studies introducing selection bias, no sample size was based on consideration of statistical power and all survey study outcomes were unable to be applied to other primary care settings.