Aging & Mental Health, 2015 Vol. 19, No. 2, 107 120, http://dx.doi.org/10.1080/13607863.2014.920301

Dementia care in the context of primary care reform: an integrative review Shannon M. Spenceley*, No€elle Sedgwick and Jessie Keenan Faculty of Health Sciences (Nursing), University of Lethbridge, Alberta, Canada (Received 13 February 2014; accepted 29 April 2014) Objectives: The purpose of this review was to determine the influence of the growing body of evidence about the attributes of high-performing primary care systems on the literature related to the primary care of people living with dementia. Methods: In this integrative review, we examined a broad range of published and grey literature (2000 2013) about the primary care of dementia, using a systematic approach set up in advance of the literature search. The review was guided by two questions: What are the evident models of primary care for dementia? How do the models line up with the other attributes of high-performing primary care? Results: Three models were noted: carved-out, co-managed, and integrative-hub, all informed by different assumptions about the role of primary care in dementia. The models varied in alignment with the attributes of high-performing primary care, although we found very little attention to accessibility, relational continuity or comprehensiveness of care. Conclusions: We know what we need to pay attention to in building our primary care system and no population will put the performance of primary care more to the test over the next two decades than the rapidly growing number of people who will be living with complex chronic conditions like dementia. Recent literature around primary care and dementia shows promise in attending to some of the attributes of high-performing primary care, yet much more work is needed if we are to truly leverage the potential value of primary care in addressing the needs of these complex and numerous future patients. Keywords: Alzheimer disease; other dementias; cognitive functioning; service provision; primary care

Introduction Few parts of the health care system have received as much attention as the primary care sector over the past decade not only in Canada, but also around the world. Primary care reform has generated substantial debate, and an expanding corpus of knowledge derived from a decade of pilot projects, research studies, reform initiatives, and policy analyses. The attributes of high-performing primary care are now well known (Graf, Bloom, Tomcavage, & Davis, 2012; Katz, Glazier, & Vijayaraghavan, 2009; McMurchy, 2009; Spenceley et al., 2013) and include the following: (1) (2) (3) (4)

timely access to primary care; population-focused accountabilities for care; active patient engagement in care; relational continuity with a trusted primary care provider; (5) comprehensive, whole-person centred care; (6) coordination and service integration around the needs of the patient/family; (7) team-based care. What is also known is that the best chance of addressing the exploding health care demand driven by chronic disease is to get primary care right (Greb et al., 2009; Spenceley et al., 2013). The World Health Organization reported an estimated 35.6 million people worldwide living with dementia in 2011, and epidemiologic studies predict that number will

*Corresponding author. Email: [email protected] Ó 2014 Taylor & Francis

nearly double every 20 years to 65.7 million in 2030, and 115.4 million by 2050 (World Health Organization, 2012). We know that a substantial proportion of dementia care happens outside of formal care environments, in communities where people live and work, supported by informal caregivers (Alzheimer Society of Canada, 2010; World Health Organization, 2012). It is also well recognized that dementia often goes undiagnosed (World Health Organization, 2012) with some sources noting that the rates of under-diagnosis are as high as 64% for community dwelling seniors (Sternberg, Wolfson, & Baumgarten, 2000). This is concerning when it is clear that early diagnosis is important to facilitate early intervention and multi-faceted support to reduce burden for patients and caregivers. For most people in Western health care systems, the first point of contact for health related concerns is a primary care provider most often a primary care physician. Yet, we know from the literature that primary care physicians often lack knowledge about dementia (Koch & Iliffe, 2010; Pimlott et al., 2009a; Renshaw, Scurfield, Cloke, & Orrell, 2001; Reuben, Roth, Kamberg, & Wenger, 2003), lack confidence in recognizing the symptoms (Harris, Chodosh, Vassar, Vickrey, & Shapiro, 2009; Iliffe & Manthorpe, 2002; Koch & Iliffe, 2010; Pimlott et al., 2009b), are unsure about how or if to conduct cognitive screening (Harris et al., 2009), face constraints in providing the time-intensive support required for patients and caregivers (Harris et al., 2009; Hinton et al., 2007; Koch & Iliffe, 2010; Pimlott et al., 2009b), lack knowledge of how to manage behavioural or

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psychological symptoms (Harris et al., 2009; Koch & Iliffe, 2010; Reuben et al., 2009), and often harbour beliefs that little can be done therapeutically in any case (Koch & Iliffe, 2010; Renshaw et al., 2001). The complexity and increasing prevalence of this chronic disease caused us to wonder about how the science of primary care reform was influencing the literature around primary care support for people living with dementia in the community.

Methods An integrative review of the literature examines a broad range of literature about a particular topic, and typically employs a wide sampling frame that includes all forms of research, theoretic literature, as well as grey literature relevant to the topic at hand (Whittemore & Knafl, 2005). Although less focused than other types of research syntheses such as meta-analyses or systematic review, the integrative review has been a useful approach for discerning overall empirical and theoretic directions and prevailing assumptions in a body of literature (Spenceley & Williams, 2006). Like other synthesis research, the integrative review follows a research protocol that is set up in advance of the literature search. The review is guided by a specific set of questions, terms are defined, search terms and strategies are determined, criteria for inclusion are established, and appraisal of the quality of included work is undertaken (Whittemore & Knafl, 2005). These elements will now be described as they were implemented in this review.

Search protocol The purpose of this integrative review was to discern the influence of the primary care reform literature on the state of the science related to primary care in the case of dementia. The review was guided by the following general question: what does the evidence say about primary care team-based models of care that best support individuals and families living with dementia in the community? A consistent observation noted in the international literature on primary care reform is that high-quality, evidenceinformed primary care is disabled by solo physician practice, founded on the stark realization that there are not enough hours in a practice day for one provider to do it all (Yarmall et al., 2009). The corollary to this is that highperforming primary care is enabled by team-based care (Grumbach & Bodenheimer, 2004; McMurchy, 2009; Starfield, Leiyu, & Macinko, 2005). Therefore, the focus on team-based models of care in this review was a deliberate strategy to discern the influence of the reform literature on primary care support for dementia. The review was further guided by a set of sub-questions: (1) What are the evident models of primary care for dementia? (i) Who are the team members suggested/model? (ii) What are the associated outcomes/model?

(2) How do the models line up with the other attributes of high-performing primary care (beyond team-based care)? Primary care was defined broadly as the first point of community-based health care access, and care qualified as team-based if the primary care practitioner regularly involved another health care provider at any point in the primary care process. Any relevant theoretic or empirical research published between 2000 and July 2013 was reviewed, as was available grey literature relevant to the topic. The focus was specifically on people living with diagnosed dementia in a community setting, and literature published relating to mild cognitive impairment was excluded, as were editorials or commentaries. After consulting with a University health sciences librarian, five databases were selected and specific search strategies and terms were defined. The databases used included the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, Cochrane Collaborative Reviews, Medline (via PubMed) and ProQuest Nursing & Allied Health Source; we also searched Google scholar. We used the CINAHL database MeSH headings to discover key terms and then additional terms were included when necessary. The following terms were used in a variety of combinations: community, primary healthcare, primary care, dementia, interventions, service delivery, care models, team-based care, team roles and patient/client support. Key authors arose from the search and we circled back to all the databases using the key authors in combination with the identified terms. The online search strategy was supplemented by mining the references of articles chosen for complete review. We also reviewed and evaluated 33 websites related to Alzheimer disease and dementia including associations, societies, and research organizations as well as government and conference websites. Results The comprehensive search led to a review of 2912 abstracts against the inclusion/exclusion criteria (see Table 1) resulting in the selection of 67 articles for complete review. Another 14 articles were chosen for further review from the ancestry search of the reference lists of reviewed articles, as well as additional supplementary information from expert colleagues. Eighty-one articles and three additional pieces of grey literature were reviewed against the interrogative questions determined by the authors (Table 1). After further review we came to a consensus on 20 pieces of work for quality appraisal: 8 quantitative research reports, 3 qualitative research reports, 7 conceptual articles and 2 pieces of grey literature. Quality appraisal Quality appraisal is challenging and complex in integrative reviews, due to the diversity of included work (Whittemore & Knafl, 2005). However, a consistent

Aging & Mental Health Table 1. Criteria and questions. Inclusion/exclusion criteria (1) Written between the year 2000 and July 2013, and in English. (2) Empirical (research of any type) or theory-focused work. (3) Grey literature (conference proceedings, government reports/ publications, web-based literature) (4) Exclude: letters to the editor; commentaries, opinion pieces, etc.). Questions to interrogate abstracts: (1) Does the article focus on primary health care services (first point of contact with the health care system) through a primary care provider (nurse or physician led clinic or community health centre; medical home; GP-led care; teambased primary care; interdisciplinary primary care; primary care trusts; community health centres/family practice or family health centres). (2) Does the article discuss team-based care or team roles and the primary care of the dementia client? (3) Is the article focused on a dementia population (diagnosed with dementia)? Do not limit by age of person with dementia. (4) Exclude if focus is anything but community based primary care (i.e. NOT acute care, NOT long-term care or nursing home). Includes people who live at home, or in an assisted living facility. (5) Does the article include discussion of models of care, types of support and/or specific care management strategies or interventions aimed at this population and in primary care? (6) Is there a discussion of intended or actual outcomes (health outcomes, cost-effectiveness, quality of life, etc.) of (#5)?

method of quality assessment that includes independent appraisal is an important aspect of any integrative review (Whittemore & Knafl, 2005). The 11 research studies were appraised using previously developed quality appraisal tools for qualitative and quantitative research, which are described elsewhere (Spenceley & Williams, 2006). An alternative appraisal tool was developed for review of the conceptual/theoretical pieces of work (Table 2). This tool was based on the work of Fawcett (2004), and developed in consultation with a scholar external to the study, a known expert in theory development. The two pieces of grey literature were obtained from online sources, and therefore assessed according to Metzger’s (2007) criteria of accuracy/consistency with other sources, authority of the source, objectivity, currency and scope/coverage of the issue. All quality review was carried out independently by the first and third

Table 2. Quality of appraisal of conceptual/theoretical articles. Criterion (1) Are assumptions, biases and values made explicit? (2) Are concepts used clearly defined? (3) Is the position taken in the paper connected logically within the paper? (internal consistency) (4) Is the position taken in the paper connected logically to existing evidence? (external congruency) (5) Does the paper make a thoughtful contribution to the thinking around primary care of people living with dementia?

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authors, with consensus reached quickly on 15 pieces of work for inclusion in the final review (Table 3). Findings The key elements extracted from the included literature followed logically from the review questions, and included the following: the model of primary care discussed, the barriers to dementia care, the intervention/programme as applicable, the team members included, the connections made to the attributes of high-performing primary care and the outcomes/key lessons learned. The results will be presented in relation to each of the review sub-questions as outlined above. What are the evident models of primary care for dementia, and who are the suggested team members? The model of primary care in each piece of included literature was either more in the ‘foreground’ as a specific configuration of primary care designed to address particular barriers to dementia care, or as implicit background to particular interventions designed to work within takenfor-granted primary care realities. We classified these models into three broad categories: carved-out, co-managed, and integrative hub models of primary care. Carved-out models of dementia care We defined these models of primary care as those that responded to the complexity of dementia care by referring patients and their caregivers to organizational resources outside the practice, or to another unit of a large health care organization. These external sources of support focused exclusively on dementia care, and the linkage of patients with dementia and their caregivers to these sources was for disease-focused education, management and support (Table 3). That is to say, these models ‘carved’ dementiarelated needs out of normal primary care, and emphasized supportive educational and care management interventions for patients provided by organizations/providers external to the primary care relationship. These models appeared to be premised on a more traditional model of primary care where the resources to respond to complexity were very limited (Barclay, Cherry, & Mittman, 2005; Bass, Clark, Looman, McCarthy, & Eckert, 2003; Burns, Nichols, Martindale-Adams, Graney, & Lummus, 2003; Cherry et al., 2004; Fortinsky, Kulldorff, Kleppinger, & KenyonPesce, 2009; Fortinsky, Unson, & Garcia, 2002). They were, however, included as ‘team-based’ because the authors made specific reference to obtaining the services of additional providers at the primary care level. The prevailing set of assumptions in these papers was that dementiarelated needs were best supported somewhat separately from other aspects of primary care for two main reasons: many needs of caregivers and patients with dementia were non-medical in nature, and the resources to explore, plan or provide the time-intensive support needed for patients and families living with this condition were more ‘specialtylike’ and thus beyond the capacity of normal primary

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Table 3. Included works. Lead author year

Type of work

Model type

Fortinsky et al. (2002)

Describes a demonstration project in an American city where 29 physicians referred 62 family caregivers to an Alzheimer Association Service Coordinator for individualized consultation regarding all non-medical aspects of dementia care and community services.

Carved-out

Burns et al. (2003)

Report of RCT comparing Behaviour Care pamphlet review with Enhanced Care (additional) pamphlets reviewed briefly by health interventionist with caregivers at scheduled visits.

Carved-out

Bass et al. (2003)

Report of RCT comparing usual managed care services (primary care provided by a physician, with patients/ caregivers able to contact the Alzheimer Association on their own), with partnered care consultation commencing with Alzheimer Society Care Consultant making contact with caregiver (with permission).

Carved-out

Cherry et al. (2004)

Report of practice initiative designed to enhance primary care of dementia by improving practice guideline uptake by primary care providers (PCPs), and providing social worker care management support to PCPs.

Carved-out

Outcomes/key lessons Two measures of caregiver selfefficacy: Degree of certainty with which caregivers can manage dementia symptoms/access community support services when needed: both increased significantly. Caregivers satisfaction: overall satisfactory Physician satisfaction: generally satisfied, but 60% of respondents indicated concern they had not received service plans Changes in physician knowledge of dementia services: increased awareness of kinds of help available General well-being scale: Behavior Care had greater distress over the 24 months, and a greater decline over time than enhanced group. Depression scale: Behavior Care group showed higher risk of depression Memory and behaviour problems: significant decrease over time in both groups. Utilization outcomes: no significant difference in patient use of hospital, ED, physician speculated may be due to other comorbidity; or consult may be insufficient to prevent this usage) Patient used community or other services less; they were similar to consultative intervention services provided) Caregiver satisfaction: those in intervention group without a confirmed diagnosis, or with more severe memory problems reported higher satisfaction Caregiver depression and strain: intervention group caregivers showed decrease in depression; nonspouse caregivers showed less relationship strain; caregivers who used other Association services in combination with intervention had reduced health deterioration and role captivity. Did not examine the impact of intervention on interactions between patients, caregivers and health care providers. Process of care indicators: significant improvements Key lessons: Dementia demands a multidisciplinary, biopsychosocial approach to care. Social workers specially trained in dementia care and partnership with community-based organizations like (continued)

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Table 3. (Continued ) Lead author year

Type of work

Model type

Barclay et al. (2005)

Evaluation of pilot project ‘Partnering with your doctor’ workshop intervention with patients/caregivers

Carved-out

Fortinsky et al. (2009)

Report of an RCT to determine the efficacy of an individualized dementia care consultation intervention for family caregivers of patients with dementia living in the community.

Carved-out

Hogan et al. (2007)

Graded research synthesis/recommendations

Co-managed

Outcomes/key lessons the Alzheimer Association can help ensure that the needs of these patients and families are met. Primary care providers alone cannot provide the range of care needed by people with dementia. Immediate satisfaction with workshop (high) Immediate increase in knowledge acquisition (significant) Majority reported long-term satisfaction with workshop via survey and telephone interviews at 6 months later. Equivocal, mixed results 6 months later related to self-reports of behaviour change Primary outcome: Nursing home admission within 12 months (intervention group slightly less likely, trended towards significance). Secondary outcomes: no significant differences in any of the following: Self-efficacy: how certain family caregivers were that they could manage dementia symptoms; and how certain they were they could access community support services. Caregiver burden Caregiver depressive symptoms Caregiver physical health symptoms Intervention process measures: Caregiver satisfaction: high satisfaction overall; some dissatisfaction that consultation was not well tailored to needs, and that relationships/ personality differences with different care consultants created difficulties. Physician use of care plan: at least one care plan in 32/37 abstracted charts; 27% of caregivers reported discussing plans with physician; 51% reported not discussing; 22% did not see physician during the year 26 care recommendations including: Education for all providers on dementia management Examination of/linkage to local services Modified chronic care approaches to account for diminished ability to self-care (although contribution to outcomes admitted as unknown) Development of shared care with specialty Adequate remuneration for providers

Co-managed (continued)

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Table 3. (Continued ) Lead author year

Type of work

Model type

Vickrey et al. (2006)

Report of a clinic-level, cluster RCT testing a guidelines-based disease management programme led by care managers at 9 intervention clinics over 12 months.

Boustani et al. (2011)

Report of practice initiative of the development, operation and performance of the Health Aging Brain Center (HABC), a stand- alone memory care consult service in a ‘comanagement framework to support the care provided by primary care clinicians’

Co-managed

Chodosh et al. (2012)

Report of secondary analysis of cluster RCT data from a dementia case management trial; analysis of how exposure to different care management programme provider types, singly or in combination, and exposure intensity were associated with positive effects on care quality when applying a coordinated care management intervention with dementia patients.

Co-managed

Callahan et al. (2006)

Report of RCT with older adults with AD and their caregivers to test effectiveness of a collaborative care specialty model inside primary care compared to augmented usual care in primary care.

Integrative hub

Outcomes/key lessons Adherence to clinical guidelines: overall adherence to 63.9% of guidelines, compared with 32.9% for controls Receipt of community resources: higher proportion of intervention group received services or info from one or more community agencies Caregiver health and quality of life: no difference in health-related quality of life; higher confidence in caregiving and caregiving mastery; higher reports of social support and receiving as much help as required. Patient’s health related quality of life decreased less than control group 528 visits; most common reason: evaluation for memory problems (81%); next was behaviours (12%). HABC cohort: lower system utilization and higher quality indicators. Those with high vascular burden reached targets for hyperlipidaemia and diabetes control more of the time. Dementia care quality in four domains assessment, treatment, education/ support, safety (mean percentage of met indicators) Significantly higher mean percentages of met indicators across all domains for exposure to any care management provider type when compared to no exposure. For all domains, higher mean% of met indicators was observed with exposure to increasing combinations of provider types; up to 73.7% higher with exposure to all three provider types. The successive addition of exposure types demonstrated a significant increase in the mean% of indicators met within all four domains. ‘Exposure to multiple provider types significantly increased quality of care and attests to the value-added importance of care integration and coordination for patients with dementia and their caregivers’ (p. 92). Neuropsychiatric Inventory (NPI) intervention group: Significantly fewer behavioural and psychological symptoms of dementia at 12 and 18 months Caregivers reported significant improvement in distress at 12 months; Improvement in caregiver depression at 18 months No significant differences on Cornell scale for depression in dementia; cognition, ADL, resource use and caregiver depression. (continued)

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Table 3. (Continued ) Lead author year

Type of work

Model type

Lee et al. (2010)

Report of practice initiative: an interdisciplinary memory clinic within a primary care practice. Aims: to provide timely access to comprehensive assessment and care, and to build capacity in referring physicians through collaborative care and practice- based mentorship.

Integrative hub

Nichols et al. (2011)

Describes the implementation (translation) of a national (US) RCT of a behavioural intervention for dementia caregivers (REACH II) into the VA primary care system (127 dyads; 24 facilities)

Integrative hub

Minghella (2012)

Synthesis of conclusions from a number of independent service improvement projects across southern England. Describes a shift to person-centred principles of respect, uniqueness and understanding dementia as a long-term condition needing increasing levels of support over time, proactive, accessible community and primary care services; shift from hopelessness to living well with dementia.

Integrative hub

Outcomes/key lessons No increase in use of antipsychotics or sedative-hypnotics Significantly higher satisfaction with care. Cost effectiveness not assessed. Conclusion: ‘care for patients with AD can be improved in the primary care setting but not without substantial changes in the system of care’ (p. 2156) Referrals: mean delay was 2.2 §1.8 months. 65% assessed did NOT receive a diagnosis of dementia and therefore not referred (patients that would formerly have been referred on to scarce specialty care). Patient/family satisfaction: very satisfied. Physician satisfaction: very satisfied, and at least half reported being more confident in their ability to assess and manage cognitive impairment; more comfortable speaking with patients; all valued the consultation notes as a learning tool; reported increased knowledge. Quality: assessed by geriatricians— 97.2% agreement with care plan Burden, depression, impact of depression on daily lives, and caregiving frustrations: significant improvement over course of study Amount of time/day spent ‘on duty’: difference of almost 2 hours (trended towards significance). Troubling behaviour: caregivers reported one fewer (significant decrease). Caregiver satisfaction: improved 38 person-centred outcomes at each phase of the ‘dementia journey’; written in first person language, related to six phases: 1: When memory problems have prompted me and/or my carer/family to seek help. 2: Learning that the condition is dementia. 3: Learning more about the disease, how to manage, options for treatment and care, and support for me and my carers/family. 4: Getting the right help at the right time to live well with dementia, prevent crises, and manage together. 5: Managing at more difficult times (including if it is not possible to manage at home) 6: Receiving care, compassion and support at the end of life. (continued)

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Table 3. (Continued ) Lead author year Somme et al. (2012)

Type of work Systematic review of RCTs of case management programmes and their impact on clinical outcomes and the utilization of resources by persons with dementia.

care. These models also proceeded on the assumption that the largest need for such patients and caregivers is for a plan of care built around dementia a plan that includes dementia-specific interventions and education to support self-management. In this category, Burns et al. (2003) described an educational intervention that was brief and focused enough to be delivered by ‘other health care providers, including nurses’ (p. 554). This paper was the clearest that any dementia intervention needed to be designed to fit the time-compressed nature of normal primary care: brief, and standardized enough to be able to be delivered by someone other than the busy physician. Subsequent papers in this category were premised on partnerships with Alzheimer Associations organizations equipped with the resources to assist with many of the ‘non-medical’ aspects of dementia care (Fortinsky et al., 2002, p. 228). Those planning and providing dementia-specific care were external to the primary care relationship. These additional providers included social work or health educator consultants, or service coordinators from an Alzheimer Association (Barclay et al., 2005; Bass et al., 2003; Cherry et al., 2004; Fortinsky et al., 2009; Fortinsky et al., 2002), or master’s prepared health educators/interventionists from an unspecified discipline (Burns et al., 2003). These service providers used education/support protocols in order to create and enact care plans targeted to patient/ caregiver non-medical needs and supports specific to dementia. In the papers describing coordination/support linkages between Alzheimer Association personnel and primary care practices (Bass et al., 2003; Cherry et al., 2004; Fortinsky et al., 2009; Fortinsky et al., 2002), it was noted that dementia-specific care plans needed to be

Model type Not classified

Outcomes/key lessons 17 references (6 RCTs). Four of these reported moderately statistically significant effects on their primary endpoint: clinical outcome in three and resource use in one (small effect). RCTs with highest integration and highest intensity of case management had the strongest results in improving quality of care Key lessons: A common analysis framework of integrated care is needed Also need: criterion for eligibility for case management that should include frailty, social isolation and situational complexity ‘Case management cannot, by itself, make a system integrated and is not a solution for all the problems of care continuity, access and quality problems encountered by the chronically ill’ (p. 9).

shared with primary care providers. Hence, these plans, as well as reminders to review them were sent back to primary providers, but with varying degrees of success. In some instances it was noted that physicians were concerned that these plans were not shared consistently (Fortinsky et al., 2002), and in others it was questioned whether or not providers in fact completed the review or did anything with the plans (Fortinsky et al., 2009). Co-managed models of dementia care The authors of the models of practice we placed into this category (Boustani et al., 2011; Chodosh et al., 2012; Hogan et al., 2007; Vickrey et al., 2006) (Table 3) also acknowledged that people living with dementia required more focused and specialized attention than was possible within traditional primary care practices, but more clearly acknowledged the centrality of the primary care relationship, and took steps to increase the comprehensiveness of primary care for this population i.e. authors of papers in this category communicated greater efforts to mesh these external resources into primary care (as contrasted with a more carved-out approach). It was clearer in these papers that the appropriate anchor point or hub for dementia care and management was the primary care relationship. Dementia was described as intensively and collaboratively co-managed between primary care and supplemental (external) support services, engaged through referral mechanisms with specific providers. Hogan et al.’s (2007) evidence synthesis of recommendations for the primary care management of mild-moderate Alzheimer disease and dementia reflected the assumption that most patients with dementia could be assessed and managed by the

Aging & Mental Health primary care physician, although they acknowledged the existence of persistent and numerous resource, attitudinal and knowledge barriers that reduce the capacity of primary care to address the complex needs of this population, necessitating referral to additional sources of support. The focus in these papers remained primarily on single disease (dementia) care management and planning (although the 2011 Boustani paper referenced the importance of multimorbidity management by the external resource receiving the referral). The emphasis was on consistent contact across agencies through explicit linkages between primary care and specific, assigned expert care managers as extended team members in external agencies with frequent communication back to the core primary care provider. These extended team members included dementia care coordinators (usually social workers) from external programmes (Boustani et al., 2011; Vickrey et al., 2006), linking up with complex care managers internal to the practice (Boustani et al., 2011; Chodosh et al., 2012; Vickrey et al., 2006). The role of robust electronic communication strategies to ensure informational continuity between these care coordinators was emphasized in the co-management model (Chodosh et al., 2012; Vickrey et al., 2006), as was the importance of supplementary services being responsive and sensitive to the needs and patterns of practice in systems of care (Boustani et al., 2011). Integrative hub models of dementia care In these papers (Callahan et al., 2006; Lee et al., 2010; Minghella, 2012; Nichols, Martindale-Adams, Burns, Graney, & Zuber, 2011), there was also the underlying assumption that primary care is the appropriate hub for dementia care. However, in these models of care, the resource deficits in primary care noted in the other models did not drive an approach that first looked outside the practice for a higher level of patient and family support the approach taken instead was one where capacity was built and resources were incorporated within the primary care setting to better support patients and families from within the context of the primary care relationship. For example, primary care physicians in a Family Health Team in Kitchener, Ontario believed that they could do a better job of providing evidence-informed dementia diagnosis and care in primary care, thereby avoiding the need to divert so many of their patients to specialty care (Lee et al., 2010). Therefore, they developed, in collaboration with local geriatricians, a primary care memory clinic. This service was planned and provided within the practice, by existing primary care team members who received additional training and ongoing consultative support from the collaborating specialists around the assessment and treatment of dementia. One of the key goals of this strategy was to build capacity within the practice, increasing the knowledge, skill and confidence of all providers in the practice, over time, to better support the complexity of dementia care at the primary level. Nichols et al. (2011) described an approach that also focused on capacity building within the practice around providing home-based

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primary dementia care, training existing staff with additional skills and education in assessment, behavioural management, support and problem-solving with patients and caregivers. The authors noted that part of the success of the intervention was that it leveraged the ongoing contact and relationship with consistent providers who provided an ongoing ‘sounding board and support’ (p. 357). In another example, Callahan et al. (2006) integrated an advanced practice nurse in the primary care practice in order to lead interdisciplinary engagement around the needs of the patient and family who were living with dementia. The focus was on earlier case finding, and then maintaining the connection, support and care management over time between the patient/family and the primary care hub an integrated, within-practice approach to earlier diagnosis, ongoing case management and linkage to community supports. In an included paper that did not fall neatly into any of the categorical models, Somme et al. (2012) reported on a systematic review of case management in community-based dementia care that has relevance here. In that review, the authors reported a relationship between better care outcomes and more integration in clinical services and between health and social services i.e. a whole-person and system-oriented approach to case management. They noted that the measure of integration used in the review was crude, and attributed this to the lack of a common analysis framework for integration of care. The authors went on to caution that ‘case management cannot, by itself, make a system integrated and is not a solution for all the problems of care continuity, access and quality problems encountered by the chronically ill’ (Somme et al., 2012, p. 9). In the integrative-hub models, there is an additional operant assumption: it is not only the intervention, or the plan that matters to the quality of care, but also the nature and continuity of the relationship with patients and families. In the final paper included in this category, Minghella (2012) proposed a model of care anchored in primary care that is premised on a radical shift in the values base a shift premised on relationship and getting to know the person/family living with dementia as unique individuals. In this paper, the author made the case that the model and the underlying values framing primary care relationships are what really matter most. In the proposed model (Minghella, 2012), providers would (1) treat dementia as a journey, with person-centred outcomes at each stage; (2) embrace person-centred principles of respect, uniqueness and understanding of the life as lived, and an understanding that dementia is a chronic condition necessitating increasing levels of support over time; (3) provide proactive, accessible and coordinated primary care and community services over time; (4) shift from a view of hopelessness and deficits to a focus on strengths and living well with dementia. Team members in the integrative-hub models were either not specified (Minghella, 2012), or were the core

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members of primary care teams: primary care physicians, registered nurses with additional education, social workers, psychologists and/or pharmacists as required (Lee et al., 2010; Nichols et al., 2011), with the support of consulting dementia or geriatric specialists integrated within primary care (Callahan et al., 2006; Lee et al., 2010) for the most complex situations. Outcomes for the associated models are also summarized in Table 3.

integrative strategies required a population-based approach (Somme et al., 2012). Two studies (both in the co-managed category) noted the importance of information technology in obtaining data across the population in order to measure the prevalence of the problem (Boustani et al., 2011), and in tracking care processes and outcomes (Chodosh et al., 2012). Active patient engagement in care

How do the models line up with the other attributes of high-performing primary care? Timely access to primary care Despite the emphasis on timely access to a primary care team as an essential consideration in primary care reform (Jesmin, Thind, & Sarma, 2012; Lerberghe, Evans, Rasanathan, & Mechbal, 2008; Neuwirth, Schmittdiel, Tallman, & Bellows, 2007; Wagner et al., 2012), across all literature in this review, timely access to primary care was simply assumed. Nichols et al. (2011) referenced the importance of attention to ‘patient-centred medical home’ concepts (p. 357), but made no specific mention of the importance of an essential principle of this conceptual model: access. Boustani et al. (2011) noted that significant clinical practice redesign is needed in order to better address the needs of patients with dementia, but access was not specifically addressed in the discussion of the stand-alone memory care clinic proposed in their paper. These authors were explicit that the goal of their Healthy Aging Brain Center (HABC) was to supplement primary care, and not to ‘take over the care of the patient from the primary care physician’ (Boustani et al., 2011, p. 18), but we wondered about the potential risk of dementia care being more easily diverted from primary care to the specialty HABC, which accepted referrals from patients, caregivers, primary care providers and specialists. Indeed, in all the examples in the carved-out and co-managed categories, we noted the interventions were likely (in essence) access strategies around the primary care provider bottleneck, although not described as such. Minghella (2012) emphasized the importance of timely access to comprehensive primary care, particularly in order to address deteriorating circumstances in as timely a manner as possible. Population-focused accountabilities for care In the primary care reform literature, this attribute highlights the importance of a primary care team being constituted and organized around meeting the identified health care needs of a defined population, and being held accountable for ongoing care quality and outcomes (Grumbach & Bodenheimer, 2004; Kates et al., 2012). Although this was not a focus in the included literature, studies that were placed into the integrative-hub category did note the importance of primary care as a place that must meet the needs of a heterogeneous population (Callahan et al., 2006; Lee et al., 2010; Nichols et al., 2011), and that measures of the outcomes of more

The primary care reform literature outlines the considerable value of mechanisms to increase patient engagement in care (Kates et al., 2012; McMurchy, 2009), particularly where self-management of a chronic condition is involved. This attribute has been heavily influenced by the development of the Chronic Care Model (Bodenheimer, 2003; Bodenheimer, Wagner, & Grumbach, 2002), where an ‘informed and activated patient’ (Bodenheimer et al., 2002, p. 1777) is charged with the accountability for self-management of the chronic condition. Most studies in this review acknowledged the value of the principle of patient engagement. Even in the earliest papers in the review, the authors noted the chronic nature of dementia, and referenced the Chronic Care Model albeit with the caveat that the principle of self-management support required adjustment to include the caregiver in self-management education, due to the patient’s diminishing capacity. Bass et al. (2003) focused on enhancing patient and caregiver competence and self-efficacy in self-management; Barclay et al. (2005) focused on consumer activation by teaching patients/caregivers how to interact with physicians; and Burns et al. (2003) emphasized teaching coping skills to the dyad, and not just the patient. Others also noted that further psychosocial and emotional support of caregivers was extremely important (Boustani et al., 2011; Cherry et al., 2004; Fortinsky et al., 2009; Fortinsky et al., 2002; Vickrey et al., 2006). Minghella (2012) was the clearest in envisioning a model of care where caregiving partnership was inherent in all elements of the primary care model. Relational continuity with a trusted provider This attribute is focused on the establishment and preservation of an ongoing, trusting relationship with a primary care physician within the context of a team (Schoen et al., 2007; Starfield et al., 2005; Yarmall et al., 2009) where the team really knows the patient and family, takes accountability for comprehensive primary care, and understands their strengths, challenges and circumstances. The influence of this attribute on the literature in this review was most evident in the integrative-hub models of care. The focus was on preserving the integrity of the primary care relationship, building the capacity of the primary care practice to take accountability for understanding and meeting the evolving needs of the patient and family within the context of that relationship (Callahan et al., 2006; Lee et al., 2010; Nichols et al., 2011), and focusing on coming to know the patient with dementia as a person first (Minghella, 2012). Studies in

Aging & Mental Health the other two categories emphasized the important contributions of other forms of continuity, such as informational continuity across settings with the help of information technology (Chodosh et al., 2012; Fortinsky et al., 2009; Vickrey et al., 2006) and continuity in care management around a single (but typically dementia-specific) care plan (Bass et al., 2003; Boustani et al., 2011; Cherry et al., 2004; Chodosh et al., 2012; Fortinsky et al., 2009; Fortinsky et al., 2002; Hogan et al., 2007; Vickrey et al., 2006)

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in those papers focusing on dementia care as a feature of comprehensive primary care, this principle was more in evidence (Callahan et al., 2006; Lee et al., 2010; Minghella, 2012; Nichols et al., 2011), although integration of services more broadly across the system was noted as an important feature to improving outcomes in other papers as well (Boustani et al., 2011; Chodosh et al., 2012; Somme et al., 2012; Vickrey et al., 2006). Discussion

Comprehensive, whole-person centred care This attribute reflects the principle that people do not experience their health or illness in fragments, but as whole experiences within a unique life. Following this principle guides primary care providers to avoid carving up care into provider-centric service chunks like preventive care, health-promoting care, chronic disease management support, and care that is more acute and episodic because doing so fragments care and decreases the value of primary care. As noted earlier, the studies in the review that were placed in the carved-out category focused on separating out aspects of dementia care from overall primary care (Barclay et al., 2005; Bass et al., 2003; Burns et al., 2003; Cherry et al., 2004; Fortinsky et al., 2009, 2002), a direction that is inconsistent with this attribute. Studies in the co-managed category also appear to be inconsistent with this principle, to the extent that the main focus remained on dementia-specific care plans to be co-managed (Chodosh et al., 2012; Vickrey et al., 2006) rather than on comprehensive, whole-person care within the primary care relationship. Finally, it follows from earlier observations that those studies classified in the integrative-hub category (Callahan et al., 2006; Lee et al., 2010; Minghella, 2012; Nichols et al., 2011) are most consistent with providing comprehensive, relational, and whole person-centred care. Coordination and service integration around the needs of the patient/family This feature of high-performing primary care relates to a focus on integrating existing and new services across all elements of the complex health and social care systems to meet patient and family needs, and connecting these services to the primary care hub (Johnson et al., 2012; Kates et al., 2012; Spenceley et al., 2013). In all studies in the review, there was an attempt to align services to better meet the needs of patients with dementia how that looked very much reflected the underlying assumptions of the prevailing model, however. In those models of care labelled as carved-out, the assumption that primary care was not equipped for dementia care was behind the drive to connect patients to resources external to primary care relationship and the concept of primary care as the hub of the care system was not clearly in evidence. Again,

Overall, the purpose of this integrative review was achieved. We conclude that there has been a slow penetration of the well-known attributes of high-performing primary care into the reviewed evidence related to primary care in the case of dementia. We observe that there has been an evolution in the dementia care literature from earlier models that emphasize customizing some limited support for dementia to fit the existing constraints of the primary care environment and ensuring an early referral on to specialty care, to supplementing the limited primary care support of such complex patients with alternative and external sources of support, to more recent assertions that primary care needs to develop an enhanced capacity to handle more complexity in dementia care, within the context of the primary care relationship. The evolution that has taken place in the literature, however, has more or less limited itself to the following shifts: (1) services and interventions should be better coordinated around the dementia; (2) models of chronic disease management should be applied to dementia care, albeit with modifications to include the role of the caregiver in selfcare because of the diminishing capacity of the patient; (3) more knowledge/education is needed for teams involved in the primary care of people with dementia. We note that more recent models in the category of integrative hub show the most progress, although we would argue that they still fall short of the paradigmatic, relational shift called for in the recent primary care reform literature. The literature reviewed here still largely places the disease-specific care plan and interventions in the foreground, and emphasizes the coordinating role of primary care. To be consistent with more recent work in primary care reform, approaches to dementia care must place the person and the primary care relationship in the foreground, assume accountability for comprehensive, whole-person primary care, and resist carved-out approaches to care. We also note that the consideration of timely access to primary care is notably absent in this literature, and there is little reflection of how all the attributes must be attended to in an integrated, systematic manner that situates primary care as the connecting hub of the health and social care systems. Furthermore, although the role of case management and specialty support is very apparent in the evolving evidence base, there is little

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attention to how these are integrated into comprehensive primary care. This literature is only beginning to reflect the growing contemporary emphasis on the healthenhancing value of trusting relationships, shared accountabilities between members of primary care provider teams and patients/families, and person-centred care that is not only accessible, but also proactive, comprehensive, coordinated and seamless around the health needs that matter the most to the patient/family. Most approaches described in the dementia care literature still favour the construction of interventions and dementia-specific care plans that focus on the coordination of disease-specific supports and services (with varying degrees of connection back to the primary care context), placing the disease in the foreground and fragmenting dementia care such that it fits within the constraints and time-compressed nature of primary care. Perhaps of greatest concern is the potential that such approaches create to divert these complex, challenging patients to somewhere other than primary care. We would argue that this belies the value of a responsive, trusting and accessible primary care relationship, where patients and families are known well, and where Minghella (2012) would argue that people should expect to receive care that recognizes dementia as an ongoing and variable feature of a unique life, rather than just a disease. Minghella (2012) is also the most provocative in terms of acknowledging that there are also implications of this ongoing relationship that must be confronted: for example, the potential of a primary care provider delaying the communication of a dementia diagnosis to a long-time patient because of a concern ‘that the diagnosis of dementia would be too difficult to handle’ (p. 23), and no doubt, difficult to deliver. We also noted an evolution in the focus of outcomes measurement in the dementia care literature. Overall, the selection of measured outcomes has moved from cross-sectional measurement of disease-specific outcomes, through to quality of care process measures, to a greater emphasis on patient/caregiver experience and satisfaction measured at consistent intervals, and most recently to recommendations to assess outcomes longitudinally from the perspective of patients/families who are experiencing dementia as a unique journey, over time. This final approach is yet to be represented in the available research literature, but denotes a promising turn in the direction of truly person-centred dementia care. Limitations We wish to acknowledge several limitations to the current review. First, the sheer scope of an integrative review is challenging, particularly within the limited resources of a small research team. Therefore, despite a systematic approach, we acknowledge that we may have missed pieces of work that would have added to the comprehensiveness of the review. Additionally, it was sometimes difficult to discern differences between the implied models of primary care underpinning interventions. This is why we have acknowledged, throughout the review, that the categories suggested are not hard

and fast, but more a matter of degree reflecting the gradual evolution in this evidence base. The exclusion of non-English language literature also introduces challenges to the comprehensive nature of the review. Finally, although focusing our review on primary care for people with diagnosed dementia did provide clarity as to the population of interest, it also introduced a limitation: we know that for a variety of reasons, dementia is under-diagnosed in the primary care environment. Therefore, innovative approaches implemented in primary care for those with mild cognitive impairment (or as yet undiagnosed dementia) will have been missed. Notwithstanding these limitations, we believe the review provokes critical thought, and challenges some prevalent assumptions in the literature around the primary care of people living with dementia. Conclusion It is now well known that health systems that exhibit the attributes of high-performing primary care produce better health outcomes for the resources invested. We also know that we are facing a tsunami of dementia, worldwide. Finally, we know what attributes we need to pay attention to in building our primary care system and we argue that no population will put the performance of primary care more to the test over the next two decades than those who will be living with complex chronic conditions like dementia. Recent literature around primary care in the case of dementia shows early promise in attending to some of these attributes, yet we have much more work to do to truly leverage the potential value of primary care in addressing the needs of these complex and numerous future patients. Acknowledgements The authors wish to express their gratitude to Marion Allen (RN, PhD Professor Emerita), University of Alberta, for her contributions in constructing the quality assessment framework for theoretical papers included in the review.

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