Did you know that annually there are 76,000 new cases of dementia each year? Alzheimer's disease and Parkinson's disease are neurodegenerative diseases that lead to dementia.
Dementia and neurodegenerative diseases are intertwined. Yet all follow their patterns in how they cause mental decline. Dementia is life-changing not only for the person who has it but for their family members too.
The diseases of dementia are challenging to diagnose early. It's often too late for effective treatment once symptoms appear. ONDRI aims to change that for patients and families alike.
If you want to learn more, you're in the right place. In this guide, you'll learn about ONDRI, an innovative group that uses a unique approach to neurodegenerative disease research.
What Is ONDRI?
ONDRI stands for the Ontario Neurodegenerative Disease Research Initiative. Its mission is to investigate the similarities and differences of the neurodegenerative diseases linked with dementia. ONDRI aims to improve the diagnosis, treatment, care, and prognosis of people living with these diseases.
Generally, the diseases of dementia are studied separately. But ONDRI takes a dynamic approach in tackling dementia by studying multiple diseases at once.
Dementia symptoms are usually a result of damaged cells and blood vessels in the brain. Dementia in itself is a gradual decline of memory and the ability to think independently. This decline eventually leads to a complete dependence on other people to manage day-to-day tasks.
Neurodegeneration is when you gradually lose the structure and function of your brain cells. Dementia is one of the leading causes of disability in Canada, and it's essential to realize dementia is not a normal part of the aging process.
Though dementia is a complex disease to diagnose and understand, many of these diseases have similar symptoms. ONDRI studies take a collaborative approach by incorporating brain imaging and genetic analysis. It also assesses mental processes, speech, language, eye tracking, and balance.
Diseases Studied at ONDRI
ONDRI studies a group of neurodegenerative diseases that are linked to dementia. ONDRI studies diseases such as:
Alzheimer's Disease is responsible for over 60% of dementia cases. Alzheimer's starts slowly and worsens over time. People often have difficulty with memory, making decisions, and performing daily activities. Eventually, they'll need assistance with self-care and all daily activities.
Mild Cognitive Impairment (MCI) causes memory loss and decline. People can still perform day-to-day functions. Your doctor will follow you closely if you have a mild cognitive impairment, as it can be one of the first signs of Alzheimer's disease.
Amyotrophic Lateral Sclerosis (ALS) is also called Lou Gehrig's disease or motor neuron disease. With ALS, there is a loss of functioning motor neurons in the brain. Eventually, it disrupts the communication from the brain to the muscles in the body. These events lead to the loss of the ability to walk, talk, swallow, and eat. Finally, breathing is affected.
Cerebrovascular Disease (CVD) comes from damaged blood vessels in the brain and can result from a stroke. When blood cells become damaged, the brain suffers from reduced blood flow. If you have CVD and other causes of dementia, it can make the disease process more severe.
Frontotemporal Dementia (FTD) is a group of diseases caused by the deterioration of the cells in the brain's frontal lobes. Symptoms can start as young as 45 and progress rapidly. There are two main types of FTD that include:
- Behavioral variant FTD has a significant effect on behavior and personality
- Primary progressive aphasia (PPA) initially affects language skills and behavior later on
Parkinson's Disease (PD) is a disease of the center of the brain that controls movement. Common PD symptoms include:
- Muscle stiffness
- Muscle rigidity
- Difficulty swallowing
- Cognitive changes
What Are ONDRI’s Assessment Platforms?
In clinical research, an assessment platform is a network of health care professionals, technical experts, and many other people who work in supportive roles. This team sets specific standards and processes that will occur during the study. Each disease studied follows the same protocols and data collection methods.
Assessment platforms are critical when studying neurodegenerative diseases because these diseases are challenging to diagnose, especially early on. Due to this, researchers have come up with new ways to measure how dementia diseases progress. It also measures how they affect people physically and mentally.
ONDRI uses specific assessment platforms for their studies. The assessment platforms include:
- Clinical which relates to mood, quality of life, medical history, and family burden
- Eye-tracking measures eye movements related to cognitive function
- Gait and balance is to evaluate balance, walking ability, and fear of falling
- Genomics looks for genetic variations
- Neuropathology looks for blood biomarkers
- Neuroimaging evaluates the structure of the brain
- Neuropsychology forms a profile of attention, memory, and language
- Remote monitoring captures the heart and brain activity during sleep
- Retinal thickness takes measurements of parts of the eye
ONDRI uses home studies to track people and get access to data they wouldn't capture in a clinic. The data captured through remote assessments is critical to improving the health and well-being of people affected by these diseases.
One of the first studies done and the beginning of ONDRI's research studies was ONDRI's Foundational Study. This study included groups of people living with at least one of the five diseases ONDRI studies. A total of 520 participants across the province were studied for five years, from 2013 to 2018. This study included:
- 126 people with Alzheimer's Disease
- 53 people with frontal lobar degeneration
- 40 people with ALS
- 140 people with Parkinson's disease
- 161 people with cerebrovascular disease
The HANDDS-ONT study stands for Health in Aging, Neurodegenerative Diseases, and Dementias in Ontario. This is a brain health research study that takes place in your home, where you'll wear sensors that measure your health and activity levels. You also have to fill out health and wellness questionnaires and visit a local laboratory for a blood sample.
A huge benefit to participating is that you'll receive personalized health and activity reports that help you improve your overall health. You're eligible for this study if you're living with a neurodegenerative disease or complications from a stroke. To participate in the study, you have to be a resident of Ontario.
ONDRI also just completed the ReMiNDD study, which stands for Remote Monitoring in people with Neurodegenerative diseases. The study looked out how well people accept and participate in remote health monitoring.
If you're interested in participating in a current study by ONDRI, you can fill out a form expressing your interest in current and future studies.
ONDRI's research is crucial to improving the diagnosis, care, and prognosis for people living with dementia-related diseases. A big part of ONDRI's research takes part at home or in the community environment. ONDRI uses remote monitoring technologies to monitor the overall health of study participants.
Behaviors like sleep and activities in the home and community are monitored using sensors worn on the body. They also answer online questionnaires regularly. The goal of this type of research is to personalize care. No two people are the same, and the effects of the disease are unique.
The study participants wear devices to track things like frequent sleeping or falling. The data can be shared with participants and their doctors. This type of monitoring helps to personalize care, safety, and well-being.
Measurements at home can also capture events that may not be obvious during a visit to the doctor. Stress on the heart, changes in health, or an increase in falls can guide managing a person's disease.
People with neurodegenerative diseases need care from many different healthcare professionals. Often mobility, distance, and waiting periods can impact a person's ability to get care. So measurements taken over a long time benefit everyone because the data guides better diagnosis, treatment, and overall care.
ONDRI Makes A Difference
The research ONDRI makes a massive difference in the lives of people affected by dementia and neurodegenerative diseases. If you or a loved one are affected by any one of these diseases, help is available for you.
With Insurdinary, you have options. You can find advice, tips, and the latest advancements in healthcare. Dementia is a challenge for everyone involved, and finding the proper healthcare is key in managing this disease.
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Make sure to reach out to Insurdinary today and live a healthier tomorrow!