Alzheimer's disease and related disorders (ADR) are a major concern not only here, but worldwide. The World Health Organization (WHO) recognizes dementia as a global public health crisis of the 21st century. Dementia affects 47.5 million people worldwide and this number is expected to double every 20 years. Patients and caregivers have trouble accessing evaluation, treatment and management services throughout the course of the disease. This is a significant problem, leading to not enough support for patients, caregivers who are stressed and overburdened, and confusion for both patients and their caregivers.
Even worse, health services for those suffering from ADR are currently fragmented and inefficient, causing inappropriate service use and increased healthcare costs. It is estimated that persons with dementia have twice the emergency hospital use as elderly people without dementia.
From 1989 to 2012, several bodies have recommended that the prevention-promotion, detection, diagnosis, treatment and care of ADR patients should be the responsibility of primary care providers. Four Canadian Consensus Conferences on the Diagnosis and Treatment of Dementia, many provincial plans (see below) and the Canadian Academy of Health Sciences have agreed that this responsibility be anchored in family medicine clinics (Family Medicine Groups in QC, Family Health Teams in ON), supported by timely collaboration from specialized professionals.
Assessing Care Models Implemented in Primary Health Care for Persons with Neurocognitive Disorders
To meet the care needs and support the quality of life of people with Alzheimer’s disease and related dementias (AD), family medicine clinics across Canada have developed various care models:
- Quebec: The Quebec Alzheimer Plan ( ENG/ FR) is currently in its second phase of implementation (First phase: 42 Family Medicine Groups, Second phase: all Family Medicine Groups)
- Ontario: Initiatives developed from individual Family Health Teams (FHTs) and Local Health Integration Networks ( ENG
- New Brunswick: Initiatives developed at the clinical level
These models all share the same overarching goal: they provide timely, patient-centered, comprehensive, and continuous collaborative care for older persons with dementia.
Even though these models have shown uptake, feasibility, and are valuable to both clinicians and patients, no systematic evaluation has been conducted. This is a problem because organizations and groups need to know what is making good care models succeed in order to spread them across Canada.
Filling this Gap: Research Objectives and Methods
The ROSA research program has three parts (convergent mixed methods research design), outlined below.
1) What is the relationship between key factors and outcomes of successful management of care models?
Quantitative cross-sectional study.
This study is taking place in 28 primary care sites across Quebec, Ontario, and New Brunswick. We used questionnaires(1) to understand clinicians’ knowledge, attitudes, and practices about the initiatives and changes put in place, as well as organizational elements of the clinic to come up with a list of possible factors. We then reviewed anonymous medical records(2) and collected information about the quality of dementia care and dementia diagnosis rate from the patient’s point of view. Together, this information was used to make a list of key factors required for quality AD care. This list was then shared with appropriate decision makers to help improve dementia care models in the future (see objective 4).
(1) Clinician Questionnaires: Many factors can influence the impact of an intervention on improving the quality of care for patients with dementia, namely the attitudes, knowledge, and practices of clinicians regarding the disease and the intervention. We built, with the help of a committee of research experts and numerous clinicians across Quebec, Ontario and New Brunswick, two questionnaires that were further validated with factorial analyses. The first questionnaire has 100 questions measuring the attitudes, knowledge, and practices of physicians and nurse practitioners, while the second has 98 questions measuring attitudes, knowledge, and practices of nurses and other healthcare professionals. The questionnaires were distributed to all clinicians involved in all the sites and used these scores in our final analyses to extract what are the best practices associated with the best quality of care for dementia patients.
(2) Patient Questionnaires: We measured the quality of care of patients with dementia by collecting data directly from the patients’ file, using a 10-item score validated by our team. These items include: have the patients’ cognition, functional status, psychiatric symptoms and behaviours and weight been evaluated at least once during the study period? Has their medication and their side effects been revised? If they are driving, has their ability to continue driving been evaluated? Similarly, has their caregiver’s burden been evaluated? Have homecare services, or Alzheimer society support been discussed?
2) Describe the models, and identify the key elements clinics need for successful implementation.
Descriptive and exploratory qualitative multiple case study.
This study takes place in 22 of the 28 sites from the first study: 10 sites each from Quebec and Ontario, and 2 sites from New Brunswick. We are studying key documents such as job descriptions, annual reports and organizational charts and policies from each site. We are also holding semi-structured interviews with the following people from each site: one manager or administrator, three clinicians (doctor, nurse, other healthcare worker), and one patient with dementia. Finally, we are interviewing one high-level representative from the Ministry of Health in each province. These interviews will help us understand the conditions and context of the qualitative results (see objective 1), as well as reveal adaptive strategies used by local clinics to overcome any difficulties they may have encountered.
3) Describe trends in quality of care and health service use of people who are newly-diagnosed with AD.
For this, we are using province-wide health administrative data to describe and compare population-based trends over time. We developed indicators to measure primary care performance and health service use for persons with AD in Quebec and Ontario using the input of stakeholders within the CCNA.
In Ontario, we will use novel statistical models to study whether new team-based primary care clinics, called Family Health Teams, have led to improve care for persons with AD.
In Quebec, we will also measure the impact of high continuity of primary care on total and inappropriate acute hospital use in patients with dementia in Quebec.
4) Share study results quickly with relevant partners
Participatory integrated knowledge transfer and exchange strategy. Many individuals are affected by this research: patients and their families, caregivers, clinicians, managers, policy and decision makers. We have involved these stakeholders in the planning and execution of the project, and it is very important that we share the results of the research with them as quickly as possible to spread, set-up, and maintain these care models across Canada. This ongoing element of the program involves meetings and other dissemination activities with stakeholders in Quebec, Ontario, New Brunswick, the rest of Canada and internationally.
Our work has long lasting impacts on clinicians, patients and caregivers:
- Through several media interviews, articles appearing in the press and other lay publications we have contributed to general public awareness. See our Media archive here.
- We have engaged with clinicians to:
- Increase the knowledge and ability to care for people with AD, especially in primary care
- Make improvements in access, quality, and continuity of care for people with AD.
- Facilitate collaboration between primary care clinicians and specialists around AD care.
- We have influenced several provincial and Canadian policies when it comes to strategies for scaling-up initiatives across Canada:
- Our results were used by the Quebec ministry of health to refine the Quebec Alzheimer Plan
- We are advising the New Brunswick government on the development of their Alzheimer Plan
- Our results were used by the Canadian Academy of Health Sciences (CAHS) during the panel requested by the Public Health Agency of Canada (PHAC) to examine the evidence available to support recent legislation creating a national strategy on dementia- see report here( EN FR
View our publication list here.