Neurological Conditions

Neurological conditions are disorders and diseases that occur as a result of injury, genetics, and exposures which cause a disruption of the normal functions and body movement governed by the nervous system. These conditions may affect the central and peripheral nervous systems. Neurological conditions are a major cause of disability in Canada. They are often chronic and their health and functional impacts may progressively worsen. For some conditions, public health professionals play an important role in primary prevention, while for other conditions; secondary prevention through screening supports early detection (Public Health Agency of Canada).

Funded Projects

Research funded by the Public Health Agency of Canada:

The Alzheimer’s prevention study (2014) (Centre for Addiction and Mental Health) will apply recent advances in brain science to clinical treatment and is directed towards interventions among people without Alzheimer’s who are at high risk of developing the disease.

The National population health study of neurological conditions (2009-2013) filled gaps in knowledge about neurological conditions and their impacts on individuals, their families, caregivers and health care systems. The study findings support improved understanding of the scope, risk factors, health system usage, progression and impacts of neurological conditions. The results from this study were released in September 2014 in a report entitled “Mapping connections, an understanding of neurological conditions in Canada“.

The following studies were included in the National population health study of neurological conditions and funded by the Public Health Agency of Canada:

  1. Neurological conditions in British Columbia (PDF Document)
  2. The Canadian longitudinal study on aging: Neurological conditions initiative (CLSA-NCI)
  3. Canadian Primary Care Sentinel Surveillance Network – Neurodegenerative conditions
  4. Use and gaps in health and community-based services for neurological populations: A systems analysis (PDF Document)
  5. Innovations in data, evidence and applications for persons with neurological conditions (PDF Document)
  6. Everyday experience of living with and managing a neurological condition
  7. National population health study of neurological conditions microsimulation component: Health and economic modelling of neurological conditions
  8. Understanding from within: Developing community-driven and culturally relevant models for understanding and responding to neurological conditions among Aboriginal People
  9. Validation of administrative data algorithms to determine population prevalence and incidence of Alzheimer’s disease and other dementias, Multiple Sclerosis, Epilepsy and Parkinson’s disease
  10. Systematic review of factors influencing the onset of neurological conditions
  11. Systematic review of factors influencing the progression of neurological conditions
  12. Canadian Neurological registry best practice guidelines and implementation toolkit
  13. Expansion of a Canadian multi-regional population-based Cerebral Palsy registry

Facts and Figures

Gaps

For many neurological conditions, there is currently no national level data in Canada to estimate the number of individuals living with these conditions or to determine whether rates of these conditions are changing. The National Population Health Study of Neurological Conditions, a 4-year (2009-2013) study led by the Public Health Agency of Canada and Neurological Health Charities Canada, produced the first reliable estimates of Canadian prevalence (number of individuals in the population with a neurological condition) and incidence (number of new cases in a given time period) for many of the targeted neurological conditions in the study. However, for many other neurological conditions, gaps continue to exist.

Prevalence

The increased life expectancy and aging of populations are predicted to increase the prevalence of many chronic diseases and conditions, including neurological conditions (World Health Organization). Neurological conditions, injuries and diseases are one of the leading causes of disability in Canada and the majority are not curable. It is estimated that 3.6 million Canadians are living in the community with at least one neurological condition. The following information is taken from the 2010/2011 Canadian Community Health Survey.

  • 319,000 – Number of people suffering from the effects of a stroke.
  • 133,000 – Number of people living with a brain injury.
  • 129,000 – Number of people living with epilepsy.
  • 118,000 – Number of people living with a spinal cord injury.
  • 112,000 – Number of people living with Alzheimer’s disease or other dementias.
  • 94,000 – Number of people living with multiple sclerosis.
  • 55,000 – Number of people living with Parkinson’s disease.

The Survey of Neurological Conditions in Institutions in Canada (2011-2012) also reported high rates of neurological conditions in the population of all ages living in long term care facilities, with 44.9% of residents presenting with Alzheimer’s disease and other dementias, 15.1% presenting with stroke, and 4.8% with Parkinson’s disease.

Economic burden

The following information is taken from National Population Health Study of Neurological Conditions (PDF Document) (2014), which focuses on a number of neurological disorders.

  • 35% of adults with a neurological condition reported that their family had experienced a financial crisis in the previous year.
  • 25.4% of adults age 18-64 yrs. with a neurological condition (excluding migraine) were permanently unable to work.

Annual total and per capita direct health care costs for 13 neurological conditions were three to 41 times higher among individuals with any of the neurological conditions studied than for individuals without that condition. For example:

  • $527,494,000 = total direct health care costs for Alzheimer’s disease and other dementias.
  • $208,679,000 = total direct health care costs for epilepsy.
  • $120,358,000 = total direct health care costs for Parkinsonism.
  • $17,720,000 = total direct health care costs for spinal cord injury.

Risk Factors

Different neurological conditions have different risk factors. For example, alcohol use during pregnancy is a risk factor for fetal alcohol spectrum disorder. Hypertension is a known risk factor for stroke, and the non-use of motorcycle helmets increases the risk of sustaining a traumatic brain injury. Unfortunately, the risk factors of many neurological conditions are not all known yet, whereas others, such as genetics and gender, cannot be controlled. In addition, risk factors for disease progression are very difficult to identify, as it is difficult to disentangle risk factors for onset from determinants of progression or rate of progression.

For more information on risk factors:

Examples of risk factors:

Prevention

Some neurological conditions can be prevented. Primary prevention activities focus on preventing neurological conditions before they occur and include simple, non-medical methods (e.g. improving roads, helmet laws, and legislation on drug and alcohol use) (World Health Organization (PDF Document)). Other primary preventative strategies for neurological conditions include preconception/prenatal folic acid supplementation to reduce the risk of neural tube defects such as Spina Bifida, and stroke prevention measures such as controlling blood pressure, cholesterol and glucose levels, reducing tobacco use, and promoting healthy eating and physical activity.


Canada

Strategies

This section presents examples of strategies that include an element of prevention that have been put in place to address neurological conditions in various jurisdictions in Canada.

The Institute of Neurosciences, Mental Health and Addiction, at the Canadian Institutes of Health Research, supports research to enhance mental health, neurological health, vision, hearing, and cognitive functioning and to reduce the burden of related disorders through prevention strategies, screening, diagnosis, treatment, support systems, and palliation.


Provincial/Territorial Strategies

British Columbia

The Provincial Dementia action plan for British Columbia: Priorities and actions for health system and service redesign (PDF Document) by the BC Ministry of Health (2012) outlines the province-wide priorities for improved, collaborative dementia care ranging from prevention through to the end of life.

Manitoba

Manitoba’s framework for Alzheimer’s disease and other dementias (PFD document) by Manitoba Health, Healthy Living and Seniors (2014) outlines recommendations for increasing awareness, early recognition, initial assessment and diagnosis as well as management, research/evaluation and palliative strategies.

The Manitoba stroke strategy 2011: Supporting prevention and extending access to care (PDF Document) by the Manitoba Health, Health Innovation Branch (2011) is built on a framework that includes primary care, health system innovation and access to care.

Ontario

The report Wired for success: Toward an Ontario brain strategy funded by Neurological Health Charities Canada (2010), documents a unique strategy combining the voices of several non-governmental organizations. It engages policy makers to consider brain conditions as one category with the possibility of common solutions.


International Strategies

International collaborative research strategy for Alzheimer’s disease. The goals of this strategy led by the Canadian Institutes of Health Research, include primary and secondary prevention as well as the improvement of quality of life for those living with the disease.

The G8 Dementia Summit Declaration (2013) outlines a commitment of the G8 countries to shape and realise an effective international response to dementia.


Australia

The Australian Department of Social Services National Framework for Action on Dementia 2015-2019 builds on the achievements of the previous National Framework for Action on Dementia 2006 – 2010 and aims to guide the development and implementation of actions, plans and policies to reduce the risk of dementia and improve outcomes for people with dementia and their carers by drawing on current evidence to promote dementia friendly societies and delivery of consumer-focused care.

Europe

The European Commission’s Council conclusions on public health strategies to combat neurodegenerative diseases associated with ageing and in particular Alzheimer’s disease (PDF Document) (2008) outlines a number of conclusions that call for the development of national strategies, action plan or other measures to facilitate the improvement of neurodegenerative diseases associated with aging.

France

Evaluation of Le plan Alzheimer 2008-2012 (2013) by the République Française (French only). Evaluation report based on rigorous quantitative and qualitative evaluation of evidence to measure the performance and outcomes of activities related to research, prevention, care, organizational goals of the 2008-13 Alzheimer Strategy.

Le plan Alzheimer 2008-2012 (2009) by the République Française (French only). The goals of this third National Alzheimer’s strategy are fourfold: to improve diagnosis, provide better treatment and support, to streamline care and to enhance research.

Le plan national d’actions AVC 2010-2014 by the République Française (French only). The goals of this national action plan for cerebral vascular accidents is centered on prevention, information, professional education, treatment pathways and research.

New Zealand

The New Zealand framework for dementia care by the Ministry of Health (2013) includes five key elements including awareness and risk reduction.

Organization for Economic Collaboration and Development (OECD)

Addressing dementia: The OECD response (2015) considers ways in which international collaboration can be harnessed to develop a global solution for the world-wide challenge of dementia.

United Kingdom

Dementia 2015: Aiming higher to transform lives by the Alzheimer’s Society (2015) looks at quality of life for people with dementia in England. It contains the results of an annual survey of people with dementia and their caregivers, and an assessment of what is currently in place and needs to be done to improve dementia care and support in England over the coming years.

Living well with dementia: A national dementia strategy by the Department of Health in the United Kingdom (2009) is a strategy to improve the quality of life of those living with dementia and their carers. The steps focus on increased awareness, early diagnosis and the development of services.

United States

National Institute of Neurological Disorders and Stroke strategic priorities and principles (2010) focuses on the reduction of the burden of neurological diseases by translating research from the previous decade into improvements in health, and by expanding basic research.

World Health Organization (WHO)

The report Dementia: A public health priority by the WHO and Alzheimer’s Disease International (2012) serves to raise the awareness of dementia as a public health priority, to articulate a public health approach and to advocate for action at the national and international levels.

Guidance

This section includes examples of guidance documents for various neurological conditions that are based on best evidence.

Canadian Guidance

Cognitive impairment

The report Screening tools to identify adults with mild cognitive impairment not associated with dementia: A review of diagnostic accuracy, effectiveness and guidelines (PDF document) by the Canadian Agency for Drugs and Technologies in Health (2013) has been written to help inform screening approaches for mild cognitive impairment related to conditions other than dementia such as fetal alcohol exposure, acquired brain injury, learning disabilities, etc.

Parkinson’s Disease

The Canadian guidelines on Parkinson’s disease (2012) provide health care professionals information on the diagnosis and treatment of Parkinson’s disease.

Provincial/territorial Guidance

British Columbia

The Model core program paper: Reproductive health and prevention of disabilities by the British Columbia Ministry of Health (2009) identifies the core elements that should be provided by the BC health authorities to support reproductive health and the prevention of disabilities.

Manitoba

Newborn screening in Manitoba: Information for health care providers (PDF Document) by the Government of Manitoba (2011) covers screening, special circumstances (prematurity, transfusions, etc.), and includes a discussion guide for parents as well as additional resources.

Surveillance

Surveillance refers to the systematic, ongoing collection, collation, and analysis of health-related information that is communicated in a timely manner to all who need to know which health problems require action in their community.

Canadian sources of ongoing surveillance:

The Public Health Agency of Canada provides Chronic Disease Infobase Datacubes which are interactive databases that allow users to create tables and graphs using their web browser and interactive maps providing current statistics on priority chronic disease and risk factor prevalence in Canada as well as for other non-communicable diseases.

The Canadian chronic disease surveillance system is a collaborative network of provincial and territorial surveillance systems led by the Public Health Agency of Canada. It provides an estimate of the prevalence and incidence of chronic conditions, use of health services, and health outcomes (including neurological conditions) using data from every province and territory. A project is under way to develop case definitions for Alzheimer’s disease and other dementias, epilepsy, multiple sclerosis, Parkinsonism, and stroke to track national prevalence and incidence, and eventually all-cause mortality, comorbidities, and use of health care services among Canadians living with these conditions.

Multiple Sclerosis

The Canadian Multiple Sclerosis Monitoring System by the Canadian Institute for Health Information has been ready to receive data since September, 2012. It measures and monitors the progression and treatment of multiple sclerosis in Canada in order to improve care and the quality of life for those living with multiple sclerosis.


Surveillance Reports

The National population health study of neurological conditions in Canada administered by the Public Health Agency of Canada and co-managed by Neurological Health Charities Canada was a unique national study designed to improve the understanding of neurological conditions and their impacts on Canadians. Included in this study are the following reports:

  1. The purpose of the Survey on living with neurological conditions in Canada (SLNCC) (2012) was to fill gaps in knowledge about individuals living with neurological conditions, their families and caregivers. It was conducted by Statistics Canada and sponsored by the Public Health Agency of Canada.
  2. The Canadian Community Health Survey: Neurological conditions prevalence files, 2010/2011 report provides information from the Canadian Community Health Survey on the prevalence of 18 neurological conditions.
  3. Neurological conditions, by age group and sex, household population ages 0 and over, 2010/2011 by Statistics Canada (2012) presents the number of persons living with various neurological conditions in table format.
  4. Understanding from within: Research findings and NWAC’s contributions to Canada’s National population health study on neurological conditions (NPHSNC) reports on a three-year research study by the Native Women’s Association of Canada (2013) that includes data, analysis and recommendations for new or continued research on neurological conditions in the Aboriginal population.

The Canadian Perinatal Surveillance System (CPSS) of the Public Health Agency of Canada has developed a fact sheet which is based on the findings from the Agency’s Maternity Experiences Survey to describe an issue of national public health significance, Folic Acid Use among Pregnant Women (2014).

The report, Focussing on the brain: An examination of neurological diseases in Canada was written by the Standing Committee on Health, Parliament of Canada (2012). It provides an overview of neurological diseases in Canada, examines different ways in which neurological research could be promoted in Canada, and highlights key factors that affect the quality of life of those suffering from neurological conditions.

The burden of neurological diseases, disorders and injuries in Canada by the Canadian Institute for Health Information (2007) is a report that provides estimates of the economic burden, disability-adjusted life years and hospital utilization for eleven neurological conditions.


Alzheimer’s and Other Dementias

The report, Rising tide: The impact of dementia on Canadian society by the Alzheimer Society of Canada (2010) presents comprehensive forecasts of the impact of dementia over a 30 year period, including economic impacts.

Traumatic Brain Injuries

The National trauma registry report: Major injury in Canada by the Canadian Institute for Health Information (2013) provides a comprehensive data set on patients hospitalized with major trauma.


Data by Province/Territory

New Brunswick

The report Neurodegenerative diseases in New Brunswick (PDF Document) published by the Office of the Chief Medical Officer of Health (2012) provides New Brunswick statistics on Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, motor neuron diseases and other neurodegenerative diseases.

International

  • Dementia research and care: Can big data help? Report on the opportunities, challenges, and strategies for sharing and linking large amounts of routinely collected population-based health and health care data with detailed clinical and biological data to advance international research, planning, policy-development, and performance improvement. Organisation for Economic Co-operation and Development (2015).

Publications

Canadian

International

Websites

Canada

Brain Canada is a non-profit organization that develops and supports neuroscience research.

Neurological Health Charities Canada (NHCC) is a collaborative of organizations that represent individuals and families impacted by neurological and/or neuromuscular diseases, disorders, conditions and injuries across Canada.

NeuroDevNet is a Canadian network of Centres of Excellence dedicated to understanding brain development and to supporting children and their families to navigate the challenges of living with neurodevelopmental disorders.

International Websites

Systematic Reviews

Systematic Reviews of the Research from HealthEvidence.org:

Search more systematic reviews.