World Health & Population

World Health & Population 18(1) December 2019 : 37-46.doi:10.12927/whp.2019.26060
Strategies For Dementia Care

Achieving the Goals of Dementia Plans: A Review of Evidence-Informed Implementation Strategies

Matthew Hacker Teper, Claire Godard-Sebillotte and Isabelle Vedel

Abstract

A 2019 report by the Canadian Academy of Health Sciences identified the importance of evidence-informed implementation strategies in reforming dementia care. Such implementation strategies may be relevant to changing clinical practice in the wake of Canada's impending federal dementia plan (initiated by Bill C-233). As this federal dementia plan is elaborated, there may be value in looking ahead to some of the implementation challenges likely to be faced "on the ground" in healthcare settings. We thus conducted a rapid review of provincial and national dementia plans from high-income countries and reviewed studies on implementation strategies to dementia care. We advance seven key implementation strategies that may be useful for future dementia care reform.

The Alzheimer Society of Canada (2010) reports that by 2038 over 1.1 million Canadians will have dementia. This represents 2.8% of the total Canadian population, with 9% of Canadians over age 60 and 50% of Canadians over age 90 having dementia (Alzheimer Society of Canada 2010). Ultimately, this prevalence of dementia will lead to a cumulative economic burden of $293 billion per year by 2040 (Alzheimer Society of Canada 2018). In response to rising global dementia rates, the World Health Organization (WHO 2012) has identified dementia as a global health priority. In Canada, this priority has been addressed provincially: beginning with Ontario in 1999 (MOHLTC 1999), provinces have gradually developed plans to address the overwhelming scale, impact and cost of dementia. While provincial stewardship in this arena is logical (Flood and Choudhry 2002), calls for a federal dementia strategy that is complementary to provincial stewardship – involving investment in research, increasing awareness of dementia risk factors and supporting and inspiring local clinicians to improve care practices for dementia – persist (Alzheimer Society of Canada 2018).

Canada's recent passage of Bill C-233, an Act respecting a national strategy for Alzheimer's disease and other dementias, suggests that a federal dementia plan may soon be established. Bill C-233 identified five priorities for dementia care reform: (1) developing national objectives, (2) encouraging investment in research, (3) coordinating with international bodies (e.g., WHO), (4) assisting provinces with the development and dissemination of diagnostic treatment guidelines and best practices for dementia care management; and (5) making recommendations for standards of care. A National Dementia Conference (PHAC 2018) and a report conducted by the Canadian Academy of Health Sciences (CAHS 2019) were organized in response to Bill C-233. Both the conference and report allowed for diverse stakeholders to share perspectives on dementia care and support, research and public education. They also suggested that implementing a dementia strategy is easier said than done. Accordingly, the CAHS recommended that evidence-informed implementation strategies be considered to achieve stated goals of dementia care reform (CAHS 2019). To respond to this final recommendation – and to support the clinic-level objectives identified by Bill C-233 and the National Dementia Conference – a synthesis of existing implementation strategies specifically relevant to dementia care is needed.

In this article, our aims are (1) to highlight why implementation strategies are essential components downstream of any dementia plan, (2) to examine the implementation strategies referenced in dementia plans of peer high-income countries and provinces; and (3) to review and propose evidence-informed implementation strategies that national and provincial governments in Canada may use as they further reform dementia care at the clinical level. To do so, we conducted a rapid review as defined by Tricco et al. (2016), examining provincial and national dementia plans from around the world. In addition, we reviewed studies on implementation strategies that are specific to dementia care reform. Note that while a dementia plan should ideally be broad, including supportive housing, community programs, caregiver support, dementia-friendly cities, transportation and anti-stigma campaigns, this paper will specifically focus on the healthcare delivery system for dementia care.

Why Implementation Strategies Matter

The inclusion of implementation strategies in dementia care reform is important for countries to reap the benefits – improved care and reduced cost – of dementia plans (Milstein and Shortell 2012). Studies have shown that the dissemination of healthcare initiatives is challenging. For example, Damschroder et al. (2009) report that only one-third of healthcare improvement initiatives successfully transition from adoption to sustained implementation across organizations. Even if implementation strategies to change clinical practice are only enacted after high-level policy is negotiated, understanding implementation challenges likely to be faced by healthcare professionals is relevant to the negotiation of funding mechanisms and resource allocation by federal and provincial governments.

Whereas many implementation strategies are applicable to any healthcare policy, specific implementation strategies matter for dementia because of the complex nature of dementia diagnosis, care and affected population. First, dementia is notoriously underdiagnosed in primary care, with rates between one-half (Bradford et al. 2009) and two-thirds (Valcour et al. 2000). The challenges of primary care physicians to diagnose dementia stem from a lack of confidence (Foley et al. 2017) and/or uncertainty about whether the diagnosis of an incurable disease such as dementia will improve the care or quality of life of a patient (Borson and Chodosh 2014). Second, optimal dementia care requires a wide range of personnel and services, which change as the needs of dementia patients evolve (Borson and Chodosh 2014). Third, patients with dementia suffer from high degrees of comorbidity, with one-third of patients experiencing five or more additional chronic conditions (Mondor et al. 2017). Acute exacerbations of these co-existing diseases often make dementia care too rare of a priority. Finally, optimal dementia care requires engaging both the patient and their caregiver(s), which is specific to dementia care (Borson and Chodosh 2014).

Shedding Light on the Lack of Implementation Strategies in Published National and Provincial Plans for Dementia

National and provincial plans for dementia have been published in 29 countries and eight Canadian provinces, according to Alzheimer's Disease International (2018). We analyzed the 24 strategies that were written in either English or French (16 countries plus all eight Canadian provinces). These reports generally share a common form: the reports define dementia and describe its prevalence and impact, underscore the purpose for a national or provincial dementia strategy and outline strategic priorities for dementia reform. These priorities typically include (1) increasing awareness and understanding of dementia, (2) promoting timely diagnosis through workforce development; and (3) improving dementia management and care. Of the 24 national and provincial plans for dementia examined, only 12 addressed the implementation strategies for the programs. The plans either introduce implementation strategies throughout the documents (i.e., tying individual strategies to specific objectives) or through explicit "stand-alone" chapters on implementation strategies, typically located towards the conclusion of the documents (Table 1).


Table 1. A list of reviewed national and provincial dementia plans, and how they address implementation strategies
Region Implementation Integrated throughout plan Stand-alone section
Country
Australia ?  
Finland      
France ?  
Greece ?  
Indonesia ?  
Ireland ?  
Israel      
Italy      
Korea 4  
Luxembourg      
Malta ?  
Netherlands      
Norway      
Switzerland      
United Kingdom ?  
United States ?  
Canadian Province
Alberta      
British Columbia      
Manitoba ?  
Newfoundland & Labrador      
Nova Scotia      
Ontario      
Quebec ?  
Saskatchewan ?  

 

More critically, even among the national and provincial plans for dementia that include sections on implementation strategies, very few plans actually articulate strategies for the diffusion or implementation of dementia care reform. They tend to state objectives but not how such objectives will be achieved or measured (e.g., "educating more people earlier about the risks of developing dementia"). The few implementation strategies that have been articulated remain vague. Strategies like "investing in research" (United Kingdom) (United Kingdom Department of Health 2009), "diversifying pedagogical approaches" (France) (Ministère des Affaires sociales, de la Santé et des Droits des femmes 2014) and "involving individuals living with dementia and their caregivers" (Switzerland and Malta) (Office fédéral de la santé publique 2013; Scerri 2014) form inadequate foundations upon which governments can orchestrate targeted and consequential steps towards achieving dementia plan goals.

A Review of Successful Implementation Strategies in Dementia Care

The literature suggests that any implementation of dementia reform, like any innovation, should target both individual adopters (healthcare professionals and informal caregivers) and whole organizations (Greenhalgh et al. 2004). Individual adopters benefit from pragmatic guidelines that target the confidence and expertise of individuals, address their concerns and encourage them to engage with dementia reform over an extended period. Implementation strategies should also be conceived at the organizational level, where integrating reforms with the current organizational context, identifying and valourizing a "champion" of dementia reform and providing additional resources and incentives may facilitate improved dementia care.

Successful Strategies at the Individual Level: Putting People First

Disseminating pragmatic guidelines and training through active, concise and varied formats

Traditional didactic and passive strategies (lecture-style meetings, printed materials and guidelines) are usually ineffective strategies for increasing healthcare professionals' knowledge of dementia and their confidence in managing patients (Aminzadeh et al. 2012; Burgio et al. 2001; Gifford et al. 1999). Healthcare professionals benefit most from problem-based and solution-focused dementia training (Yaffe et al. 2008). Whatever the intervention, strategies that focus on pragmatic benefit and usability should be developed (Aminzadeh et al. 2012). Guidelines must recognize the importance of the patient–caregiver dyad, which is specific to dementia (CAHS 2019). For example, caregivers benefit from specialized training including practice opportunities, personalized feedback and collaboration with practitioners (Chesney et al. 2011; Mazmanian and Davis 2002; Soumerai 1998). Guidelines to healthcare professionals and informal caregivers should be communicated in succinct and synchronized trainings to minimize "guideline fatigue" (Aminzadeh et al. 2012). These guidelines should also include recent recommendations from the Fourth Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (Gauthier et al. 2012). Finally, guidelines should be encompassing of the comorbidity associated with dementia that often compounds physicians' difficulty with diagnosing and providing care for dementia and patients' difficulty with living with the disease while managing other chronic conditions (Borson and Chodosh 2014; Mondor et al. 2017).

Promoting confidence and expertise

Implementation strategies must be designed to target the confidence of healthcare professionals who feel ill-equipped to diagnose and care for dementia in Canada (Aminzadeh et al. 2012). Confident healthcare professionals are more likely to take a keen interest in dementia and dementia care reform and to diagnose dementia in a timely way (Aminzadeh et al. 2012; Moore and Cahill 2012). Confidence and expertise may be self-initiated, but governments can also furnish this capacity by providing funding and resources to train additional staff, such as geriatric nurses, who can collaborate and mentor closely with other clinicians (Aminzadeh et al. 2012).

Addressing concerns of potential adopters

Similarly, many healthcare professionals approach dementia diagnosis and care from a nihilist perspective (Pentzek et al. 2009). Family physicians are concerned about whether a diagnosis will improve the quality of life of a patient (Borson and Chodosh 2014) and whether dementia care interventions will result in improved care (Black and Fauske 2007; Netting and Williams 1999; Seddon and Robinson 2001). Studies show that when healthcare professionals maintain negative attitudes towards dementia interventions, the interventions are less likely to be adopted (Khanassov et al. 2014). A final unique barrier remains the reluctance of some family physicians to be trained in dementia care by non-physicians (Cameron et al. 2010).

Encouraging adopters to engage with the intervention over an extended period

Interventions take time to implement, and practices take time to change. This is especially true in dementia care, which mobilizes multiple health and social service organizations. Accordingly, benefits of dementia diagnosis and management take time to emerge. Persistence with interventions is thus particularly important in the context of dementia care. When healthcare professionals engage with new dementia programs for longer durations, their adherence to, and confidence in, the interventions increases (Cherry et al. 2004; Gladman et al. 2007; McCrae and Banerjee 2011; Netting and Williams 1999; Van Eijken et al. 2008). Eventually, as outcomes become perceivable, healthcare professionals feel increased self-worth and accomplishment (Grinberg et al. 2008).

Successful Strategies at the Organizational Level: Teamwork and Resources

Integration with current context

Dementia interventions that are implemented in ways that are compatible with the current healthcare structure are more likely to be well-received by healthcare professionals (Khanassov et al. 2014). This can be challenging, since dementia care is often time-consuming, especially for solo practitioners (Hinton et al. 2007). Team-based care, with a clear division of labour, is needed. For example, nurses (referred to as infirmières pivots, "pivot nurses") are particularly suited to conduct cognitive screening, assessment and functional evaluation (Bergman 2009).

Identifying and valourizing a "champion" of dementia reform

As is usually the case for any policy or program implementation, a critical predictor for the successful implementation of a strategy is the presence of a physician or nurse who serves as a "clear champion" for dementia reform (Gifford et al. 1999). This champion, who recognizes the potential benefits of new recommendations, including timely diagnosis of dementia and interdisciplinary management, takes an active role in convincing other colleagues to use the guidelines (Gifford et al. 1999). If the champion is knowledgeable in dementia management, they may also provide support and guidance to peers. Championing dementia reform can be individual- or team-based.

Resources, incentives and culture

Governments must also fund and support dementia-specific resources beyond the clinic: home-based care, community services, transportation, long-term care and assistive devices. Healthcare professionals should be trained to know which of these options or services are available in the region, how efficient and organized these resources are and how to refer patients to them (Yaffe et al. 2008). Governments should also consider personal incentives (such as remuneration and other motivations) and cultural differences (unique perceptions of dementia and caregiving, especially in rural, Northern or immigrant communities) when developing strategies for implementation (Braun and Browne 1998; Khanassov et al. 2014; Martindale-Adams et al. 2017).

Limitations

This rapid review serves as a brief overview of the current state of dementia plans, vis-à-vis implementation strategies, across Canada and other high-income countries. However, our analysis is limited. First, untranslated dementia plans (written in languages other than English or French), or those not available in the public domain, were not examined. Also, this review was limited to national and provincial plans. Grey literature (including future policy enforcement documentation) was not examined. Accordingly, we may have missed more applied guidelines (including implementation strategies) in subsequent years.

Summing Up: Implementation Strategies for Dementia

Even if implementation strategies are not included in national and provincial dementia plans, they will ultimately be relevant to transforming dementia care practice "on the ground." This article advances several dementia-specific implementation strategies that can be leveraged to improve the diagnosis and management of dementia. These strategies should be considered as future dementia plans are translated from policy to action.

About the Author

Matthew Hacker Teper, BA, MSC, Researcher, Department of Family Medicine, Faculty of Medicine, McGill University, Montreal, QC

Claire Godard-Sebillotte, MD, PhD Candidate, Department of Family Medicine, Faculty of Medicine, McGill University, Montreal, QC

Isabelle Vedel, MD-MPH, PhD, Assistant Professor, Department of Family Medicine, Faculty of Medicine, McGill University, Montreal, QC

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Footnotes

This article originally appeared in Healthcare Policy 14(4) May 2019: 10–20. 10.12927/hcpol.2019.25860. <https://www.longwoods.com/content/25860/healthcare-policy/achieving-the-goals-of-dementia-plans-a-review-of-evidence-informed-implementation-strategies>.

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