Latest Canadian Consensus Conference on the Diagnosis and Treatment of Dementia: What's in It for Primary Care?

In 2020, the fifth Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD5) published up-to-date recommendations for the clinical management of persons living with dementia (PLWD) and their caregivers. During the CCCDTD5 meetings, a list of recommendations for dementia care was compiled. With the aid of family physicians and the Canadian Consortium on Neurodegeneration in Aging, we selected the most relevant CCCDTD5 recommendations for primary care and tailored and summarized them in the present manuscript to facilitate their reference and use. These recommendations focus on (a) risk reduction, (b) screening and diagnosis, (c) deprescription of dementia medications, and (d) non-pharmacological interventions. The development of recommendations for the ongoing management of dementia is an iterative process as new evidence on interventions for dementia is published. These recommendations are important in the primary care setting as the entry point for PLWD into the health system.

Engaging People With Lived Experience of Dementia in Research: Perspectives From a Multi-disciplinary Research Network.

Background: Patient and public involvement/engagement in research on dementia is not new, but it is becoming increasingly common. The objective of this study was to describe researchers' knowledge, attitudes, and activities related to engaging people with lived experience of dementia in research, and how these differ by research theme. Methods: Data were from an online, anonymous survey of researchers within the Canadian Consortium on Neurodegeneration in Aging. Results: Of the 84 researchers who completed the survey (response rate: 27%), 89% agreed they understood the meaning of engaging people with lived experience in research, although this was lower among biomedical researchers. Almost all (93%) agreed that people with lived experience could contribute meaningfully to research, and nearly two-thirds were already incorporating engagement in their research. Some engagement practices reported differed by research theme. Irrespective of the type of research they conduct, researchers were most often motivated by improving the relevance and quality of their research. Conclusions: These findings support an optimistic outlook for engaging people with lived experience of dementia in research, but identify differences across research themes. Understanding approaches to incorporate, evaluate, and adapt engagement activities across research disciplines are needed to enable researchers, as well as others involved in research, to develop and target strategies for patient and public involvement/engagement in research on dementia.

Latest Canadian consensus conference on the diagnosis and treatment of dementia for primary care clinicians.

Context: Dementia, characterized by a progressive decline in cognition, affects more than 50 million people globally. In 2020, the 5th Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD5) published up-to-date recommendations to guide the clinical management of persons living with dementia (PLWD) and their caregivers. However, primary care clinicians are not always up-to-date with current evidence as the information might be fragmented. Objective: To provide selected new and updated clinical guidance on the management of patients with dementia that are simple to use in a routine primary care practice. Study design: Recommendations were approved and graded based on the Appraisal of Guidelines for Research and Evaluation (AGREE II collaboration), GRADE, and a Delphi process. Setting: Working groups included experts from different backgrounds (primary care physicians, nurse practitioners and other primary care clinicians, neurologists, psychiatrists and geriatricians, researchers, knowledge translation experts, decisions makers, and PLWD and caregivers' representatives). The experts carried out systematic reviews, which guided the development of new recommendations for dementia care. Recommendations included: We summarize the most relevant CCCDTD5 recommendations for primary care clinicians Results: The relevant recommendations for primary care were focused on: a) risk reduction for the general population (nutrition, exercise, social engagement, education, and medication management), as well as for persons at risk of dementia (evaluation of hearing status and sleep, and cognitive training stimulation); b) screening and diagnosis of dementia, including the role of the informant, screening for patients at risk or with symptoms, use of cognitive tests and neuro-imaging, management of subjective cognitive decline); c) de-prescribing medications for dementia, including aspirin and cognitive enhancers; and d) non-pharmacological interventions for persons with dementia (exercise, cognitive stimulation therapy, psychoeducational interventions for caregivers, case management and dementia-friendly community/organizations). Conclusions: The development of recommendations for ongoing management of dementia is an iterative process as new evidence on interventions for dementia are published. The present recommendations are of importance for dementia care in a primary care setting as the entry point for PLWD into the health system.

A scoping review of COVID-19 experiences of people living with dementia.

OBJECTIVES: Compared with the general population, people living with dementia have been unequivocally affected by the COVID-19 pandemic. However, there is a paucity of knowledge on the COVID-19 impact on people with dementia and their care partners. The objective of this scoping review was to synthesize the existing literature on the COVID-19 experiences of people with dementia and their care partners. METHODS: Following Arksey and O'Malley's scoping review framework, we searched five electronic databases (Scopus, PubMed, CINAHL, EMBASE, and Web of Science) and an online search engine (Google Scholar). Inclusion criteria consisted of English-language articles focusing on the COVID-19 experiences of people with dementia and their care partners. SYNTHESIS: Twenty-one articles met our inclusion criteria: six letters to the editor, seven commentaries, and eight original research studies. In the literature, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of access to services and supports; (iii) worsening neuropsychiatric symptoms and cognitive function; (iv) coping with COVID-19; and (v) the need for more evidence-informed research. Factors such as living alone, having advanced dementia, and the length of confinement were found to exacerbate the impact of COVID-19. CONCLUSION: Urgent action is needed to support people living with dementia and their care partners in the pandemic. With little access to supports and services, people with dementia and their care partners are currently at a point of crisis. Collaboration and more evidence-informed research are critical to reducing mortality and supporting people with dementia during the pandemic.

RéSUMé: OBJECTIFS: Comparativement à la population générale, les personnes vivant avec la démence ont incontestablement été touchées par la pandémie de COVID-19. On en sait toutefois peu sur l'effet de la COVID-19 sur les personnes atteintes de démence et leurs partenaires soignants. Notre étude de champ visait à résumer la littérature existante sur l'expérience de la COVID-19 chez les personnes atteintes de démence et leurs partenaires soignants. MéTHODE: En suivant le cadre méthodologique d'Arksey et O'Malley pour les études de champ, nous avons interrogé cinq bases de données électroniques (Scopus, PubMed, CINAHL, EMBASE et Web of Science) et un moteur de recherche en ligne (Google Scholar). Nous avons inclus tous les articles en anglais portant sur l'expérience de la COVID-19 chez les personnes atteintes de démence et leurs partenaires soignants. SYNTHèSE: Vingt et un articles ont correspondu à nos critères d'inclusion : six lettres publiées dans le courrier des lecteurs, sept commentaires et huit études de recherche originales. Cinq grands thèmes sont ressortis de ces articles : i) la fatigue et l'épuisement professionnel des partenaires soignants; ii) le manque d'accès aux services et aux mesures d'aide; iii) l'aggravation des symptômes neuropsychiatriques et des fonctions cognitives; iv) les façons de faire face à la COVID-19; et v) le besoin de plus de recherche fondée sur les preuves. Nous avons constaté que trois facteurs, soit le fait de vivre seul(e), la démence avancée et la durée du confinement, exacerbaient l'effet de la COVID-19. CONCLUSION: Une action urgente est nécessaire pour aider les personnes vivant avec la démence et leurs partenaires soignants durant la pandémie. N'ayant guère accès aux mesures d'aide et aux services, les personnes atteintes de démence et leurs partenaires soignants se trouvent actuellement dans une situation de crise. La collaboration et la recherche fondée sur les preuves sont essentielles pour réduire la mortalité et aider les personnes atteintes de démence durant la pandémie.

Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study.

BACKGROUND: The COVID-19 pandemic is affecting people with dementia in numerous ways. Nevertheless, there is a paucity of research on the COVID-19 impact on people with dementia and their care partners. OBJECTIVE: Using Twitter, the purpose of this study is to understand the experiences of COVID-19 for people with dementia and their care partners. METHODS: We collected tweets on COVID-19 and dementia using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. RESULTS: From the 5063 tweets analyzed with line-by-line coding, we identified 4 main themes including (1) separation and loss; (2) COVID-19 confusion, despair, and abandonment; (3) stress and exhaustion exacerbation; and (4) unpaid sacrifices by formal care providers. CONCLUSIONS: There is an imminent need for governments to rethink using a one-size-fits-all response to COVID-19 policy and use a collaborative approach to support people with dementia. Collaboration and more evidence-informed research are essential to reducing COVID-19 mortality and improving the quality of life for people with dementia and their care partners.

CCCDTD5: Individual and community-based psychosocial and other non-pharmacological interventions to support persons living with dementia and their caregivers.

INTRODUCTION: Current pharmacological therapies for dementia have limited efficacy. Thus it is important to provide recommendations on individual and community-based psychosocial and non-pharmacological interventions for persons living with dementia (PLWDs) and their caregivers. METHODS: Phase 1: A systematic review for developing recommendations on psychosocial and non-pharmacological interventions at the individual and community level for PLWDs and their caregivers. Phase 2: Rating of recommendations using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) guidelines. Phase 3: Delphi process (>50 dementia experts) for approving recommendations by the 5th Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD5). RESULTS: The CCCDTD5 approved the following recommendations: Exercise (1B) and group cognitive stimulation for PLWDs (2B), psychosocial and psychoeducational interventions for caregivers (2C), development of dementia friendly organization and communities (2C), and case management for PLWDs (2B). DISCUSSION: The CCCDTD5 provides for the first time, evidence-based recommendations on psychosocial and non-pharmacological interventions for PLWDs and their caregivers that can inform evidence-based policies for PLWDs in Canada.

Pandemic Dementia Scarce Resource Allocation.

Hospitals and intensive care units are straining to provide care for a large surge of patients with coronavirus disease 19 (Covid-19). Contingency plans are being made for the possibility that resources for lifesaving care, including mechanical ventilators, will be in short supply. Covid-19 is more severe and more likely to be fatal in older persons. Dementia is one of the commonest severe comorbidities of aging. Persons with dementia are vulnerable and often need the support of others to make their voices heard. This commentary, created by a task force commissioned by the Alzheimer Society of Canada, provides guidance for triaging persons with dementia to scarce medical resources during the Covid-19 pandemic.

Recommendations of the 5th Canadian Consensus Conference on the diagnosis and treatment of dementia.

Since 1989, four Canadian Consensus Conferences on the Diagnosis and Treatment of Dementia (CCCDTD) have provided evidence-based dementia guidelines for Canadian clinicians and researchers. We present the results of the 5th CCCDTD, which convened in October 2019, to address topics chosen by the steering committee to reflect advances in the field, and build on previous guidelines. Topics included: (1) utility of the National Institute on Aging research framework for clinical Alzheimer's disease (AD) diagnosis; (2) updating diagnostic criteria for vascular cognitive impairment, and its management; (3) dementia case finding and detection; (4) neuroimaging and fluid biomarkers in diagnosis; (5) use of non-cognitive markers of dementia for better dementia detection; (6) risk reduction/prevention; (7) psychosocial and non-pharmacological interventions; and (8) deprescription of medications used to treat dementia. We hope the guidelines are useful for clinicians, researchers, policy makers, and the lay public, to inform a current and evidence-based approach to dementia.

Is Dementia Screening of Apparently Healthy Individuals Justified?

Despite efforts to raise awareness and develop guidelines for care of individuals with dementia, reports of poor detection and inadequate management persist. This has led to a call for more identification of people with dementia, that is, screening individuals who may or may not complain of symptoms of dementia in both acute settings and primary care. The following should be considered before recommending screening for dementia among individuals in the general population. Dementia Tests. Low prevalence reduces positive predictive value of tests and screening tests will miss people who have dementia and identify people who do not have dementia in substantial numbers. Clinical Issues. The clinical course of dementia has not yet been shown to be amenable to intervention. Misdiagnosis and overdiagnosis can have significant long-term effects including stigmatization, loss of employment, and autonomy. Economic Issues. Health systems do not have the capacity to respond to increased demand resulting from screening. In conclusion, at present attention to life-course risk reduction and support in the community for frail and cognitively impaired older adults is a better use of limited healthcare resources than introduction of unevaluated dementia screening programs.

Diagnosis and Disruption: Population-Level Analysis Identifying Points of Care at Which Transitions Are Highest for People with Dementia and Factors That Contribute to Them.

OBJECTIVES: To examine transitions that individuals with dementia experience longitudinally and to identify points of care when transitions are highest and the factors that contribute to those transitions. DESIGN: Population-based 10-year retrospective cohort study from 2000 to 2011. SETTING: General community. PARTICIPANTS: All individuals aged 65 and older newly diagnosed with dementia in British Columbia, Canada. MEASUREMENTS: The frequency and timing of transitions over 10 years, participant characteristics associated with greater number of transitions, and the influence of recommended dementia care and high-quality primary care on number of transitions. RESULTS: Individuals experience a spike in transitions during the year of diagnosis, driven primarily by hospitalizations, despite accounting for end of life or newly moving to a long-term care facility (LTCF). This occurs regardless of survival time or care location. Regardless of survival time, individuals not in LTCFs experience a marked increase in hospitalizations in the year before and the year of death, often exceeding hospitalizations in the year of diagnosis. Receipt of recommended dementia care and receipt of high-quality primary care were independently associated with fewer transitions across care settings. CONCLUSION: The spike in transitions in the year of diagnosis highlights a distressing period for individuals with dementia during which unwanted or unnecessary transitions might occur and suggests a useful target for interventions. There is an association between recommended dementia care and outcomes and evidence of the continued value of high-quality primary care in a complex population at a critical point when gaps in continuity are especially likely.

Caring for dementia: a population-based study examining variations in guideline-consistent medical care.

BACKGROUND: Evidence indicates that early detection and management of dementia care can improve outcomes. We assess variations in dementia care based on processes outlined in clinical guidelines by the BC Ministry of Health. METHOD: A population-based retrospective cohort study of community-dwelling seniors using patient-level administrative data in British Columbia, Canada. Guidelines measured: laboratory testing, imaging, prescriptions, complete examination, counseling, and specialist referral. RESULTS: Older patients were less likely to receive guideline-consistent medical care. Patients in higher income categories had higher odds of receiving counseling (confidence interval or CI 1.13-153) and referrals (15.1 CI 1.18-1.95) compared with those of lower income. Over a quarter of the cohort received an antipsychotic (28%) or nonrecommended benzodiazepine (26%). Individuals living within "rural" health authorities or of low income were more likely to receive antipsychotic treatment. CONCLUSION: Patterns of inequality by age and income may signal barriers to care, particularly for management of dementia care processes.

Exploring the ecology of Canada's publicly funded residential long-term care bed supply.

Despite Canada's increasing population of seniors and the varying long-term care (LTC) strategies that provinces have implemented, little research has focused on understanding the extent to which publicly funded residential LTC bed supply varies across provinces, or the factors influencing this variation. Our study involved an analysis in which we examined the association of three select jurisdictional characteristics with LTC bed supply: population age demographics, provincial wealth, and provincial investments in home care. No significant cross-jurisdictional "ecology" or inter-relatedness was found between the variation in LTC bed supply and any of the examined variables. Interprovincial variation in bed supply also did not statistically influence alternate level of care days specific to LTC waits, suggesting that these days were not influenced simply by differences in LTC bed supply and that other provincial-level factors were in play.

Full-service family practice in British Columbia: policy interventions and trends in practice, 1991-2010.

BACKGROUND: British Columbia's primary care reform (initiated in 2002) aims to promote "full-service family practice" through incentive payments and other practice support programs. Despite attention to policy, no longitudinal analysis has been conducted of the activities of BC primary care physicians. METHODS: This study employed linked administrative health data from 1991/92 through 2009/10 to describe dimensions of care from the definition of "full-service family practice" used in BC reform, grouped into four categories: access, continuity, coordination and comprehensiveness. RESULTS: Access, continuity and coordination of care fell over the study period (p < 0.001). Some dimensions reflecting comprehensiveness of care declined (obstetrics and geriatric care), though the remainder did not change significantly. Overall declining trends were consistent across physician characteristics and remained significant when accounting for shifts to non- fee-for-service payment. CONCLUSION: Findings suggest efforts are not achieving their intended aims. Rigorous evaluation of individual components of reform is needed.

Capacity development in health systems and policy research: a survey of the Canadian context.

BACKGROUND: Over the past decade, substantial global investment has been made to support health systems and policy research (HSPR), with considerable resources allocated to training. In Canada, signs point to a larger and more highly skilled HSPR workforce, but little is known about whether growth in HSPR human resource capacity is aligned with investments in other research infrastructure, or what happens to HSPR graduates following training. METHODS: We collected data from the Canadian Institutes of Health Research, Canada's national health research funding agency, and the Canadian Association for Health Services and Policy Research on recent graduates in the HSPR workforce. We also surveyed 45 Canadian HSPR training programs to determine what information they collect on the career experiences of graduates. RESULTS: No university programs are currently engaged in systematic follow-up. Collaborative training programs funded by the national health research funding agency report performing short-term mandated tracking activities, but whether and how data are used is unclear. No programs collected information about whether graduates were using skills obtained in training, though information collected by the national funding agency suggests a minority (<30%) of doctoral-level trainees moving on to academic careers. CONCLUSIONS: Significant investments have been made to increase HSPR capacity in Canada and around the world but no systematic attempts to evaluate the impact of these investments have been made. As a research community, we have the expertise and responsibility to evaluate our health research human resources and should strive to build a stronger knowledge base to inform future investment in HSPR research capacity.

Variations in self-reported practice of physicians providing clinical care to individuals with dementia: a systematic review.

OBJECTIVES: To determine to what extent actual practice as reported in the literature is consistent with clinical guidelines for dementia care. DESIGN: A systematic review of empirical studies of clinical services provided by physicians to older adults with a diagnosis of dementia. SETTING: All settings involving primary care physicians in which a diagnosis of dementia is provided. PARTICIPANTS: Physicians providing care to individuals aged 60 and older with a primary or secondary diagnosis of dementia. INTERVENTION: Seven dementia care processes recommended by guidelines: formal memory testing, imaging, laboratory testing, interventions, counseling, community service, and specialist referrals. MEASUREMENTS: Web of Knowledge, PubMed, Science Direct, MedLine, PsychINFO, EMBASE, and Google Scholar databases were searched for articles in English published before March 1, 2012. RESULTS: Twelve studies met the final inclusion criteria, all of which were self-reported cross-sectional surveys. There was broad variation in the proportion of physicians who reported conducting each dementia care process, with the widest variation in formal memory testing (4-96%). Recently published studies reflected a shift in scope of care, reporting that high proportions of physicians provided interventions, counseling, and referrals to specialist. CONCLUSION: Despite the availability and dissemination of established best practice guidelines, there is still wide variation in physician practice patterns in dementia care. The quality of currently available studies limits the ability to draw strong conclusions. Better information on practice patterns and their relationship to outcomes for individuals with dementia and their caregivers using more-robust study designs is needed to address the needs of the increasing number of individuals who will require dementia care.

A method for identifying research priorities for health systems research on health and aging.

A rapid and feasible priority-setting method conducted within a limited budget was used to identify research topics that would have an influence on health services for older adults. Health and aging researchers, policy makers, and caregivers were recruited to complete Delphi surveys that generated and ranked topics and identified other potential researchers. An interdisciplinary team of researchers was selected to produce and submit a proposal to a peer-review-granting agency. This method can be adapted by organizations to determine the focus of their research agenda and to engage individuals for collaboration on future research projects.

Designation, diligence and drift: understanding laboratory expenditure increases in British Columbia, 1996/97 to 2005/06.

BACKGROUND: Laboratory testing is one of the fastest growing areas of health services spending in Canada. We examine the extent to which increases in laboratory expenditures might be explained by testing that is consistent with guidelines for the management of chronic conditions, by analyzing fee-for-service physician payment data in British Columbia from 1996/97 and 2005/06. METHOD: We used direct standardization to quantify the effect on laboratory expenditures from changes in: fee levels; population growth; population aging; treatment prevalence; expenditure on recommended tests for those conditions; and expenditure on other tests. The chronic conditions selected were those with guidelines containing laboratory recommendations developed by the BC Guidelines and Protocol Advisory Committee: diabetes, hypertension, congestive heart failure, renal failure, liver disease, rheumatoid arthritis, osteoarthritis and dementia. RESULT: Laboratory service expenditures increased by $98 million in 2005/06 compared to 1996/97, or 3.6% per year after controlling for population growth and aging. Testing consistent with guideline-recommended care for chronic conditions explained one-third (1.2% per year) of this growth. Changes in treatment prevalence were just as important, contributing 1.5% per year. Hypertension was the most common condition, but renal failure and dementia showed the largest changes in prevalence over time. Changes in other laboratory expenditure including for those without chronic conditions accounted for the remaining 0.9% growth per year. CONCLUSION: Increases in treatment prevalence were the largest driver of laboratory cost increases between 1996/97 and 2005/06. There are several possible contributors to increasing treatment prevalence, all of which can be expected to continue to put pressure on health care expenditures.

Cystamine and ethyl-eicosapentaenoic acid treatment fail to prevent malonate-induced striatal toxicity in mice.

Cystamine has demonstrated neuroprotective activity in a variety of studies, and is currently being evaluated in a human clinical trial in Huntington's disease (HD). Cystamine treatment of various genetic models of HD demonstrated protection against neurodegeneration and/or improvement in behavior. Given the need for a rapid screening tool for HD therapeutics, we assessed the potential therapeutic benefits of cystamine in a short-term acute toxicity murine model of striatal cell death. Cystamine did not provide neuroprotection against bilateral intrastriatal malonate injections in mice as measured by lesion size, loss of striatal volume, or decreased striatal neuronal counts. Similar results were obtained for treatment with another potential therapeutic agent that was protective in genetic mouse models of HD, the essential fatty acid ethyl-eicosapentaenoic acid. Our findings suggest that this toxic model is not reflective or predictive of findings in genetic mouse models, and may not be useful as a preclinical screen for HD therapeutics.