Big sister Debbie has always been there for Cindy; this time, as they scurry through hospital corridors, a little late for their first appointment of the day.

Together, the siblings navigate traffic, banter over the long drive from Brantford, and keep on top of appointments. Debbie is a little on edge, given the circumstances. She takes her support role seriously, as she – more than most, due to her career in nursing – understands its importance to patients; her sister, in this case. Cindy, as a result, comes across as laid back and has an energetic spring in her step.

Despite having left early as they always do, the heavy fog and wet morning meant road conditions were heavier than usual. But nothing was going to get in their way…

Cindy is part of a clinical trial, or research study, that is testing an investigative drug therapy for the prevention of Alzheimer’s disease. It is one of many dementia research trials from the Brain Lab in the Dr. Sandra Black Centre for Brain Resilience and Recovery at Sunnybrook Health Sciences Centre.

A volunteer participant for the study, Cindy is required to come in to hospital for regular visits – twice a month in her case, for now. This trip marked a year of visits; expected to continue another four years, for the duration of the five-year study.

Why would someone like Cindy – who shows no symptoms of Alzheimer’s disease – need or want to take that time to participate in such a research study?

When I first heard about this study, I knew right away I wanted to be a part of it. My mother had dementia, Alzheimer’s disease (AD). Seeing mom deteriorate mentally, it was difficult. She would have been in her late sixties, when she started manifesting confusion. She deteriorated; it was tough to see her go downhill. I wanted to learn what my risk was, to see if I could get more information, and what I could do about it”

Cindy Greatex,
clinical trial research participant,
68 years old 

Dementia is a term for several diseases that affect memory, thinking, and the ability to perform daily activities, with Alzheimer’s being the most common, contributing to about 60 to 70 per cent of dementia cases.

According to the World Health Organization, the illness gets worse over time and mainly affects older people. Having a family history of Alzheimer’s disease – in particular, if a biological parent or sibling has the disease – increases the risk of developing it.

As a part of the study, Cindy had the option to have her genes tested; she didn’t hesitate. The results showed that she has the strongest genetic risk factor for AD – which means she has a 15 times higher risk of developing the brain disorder than the average person.

As a medical doctor, Sunnybrook cognitive neurologist and brain scientist Dr. Sandra Black knows too well the devastating effects that diseases of the brain can have on patients, their quality and length of life, and their impact to families and loved ones.

Recognized internationally for her contributions to the diagnosis and treatment of vascular dementia, Alzheimer’s disease and stroke, Dr. Black has been compassionately providing care to patients and their families for most of her career, while working to advance research into what we know about the brain. This includes leading 88 clinical trials and training 110 trainees – new generations of clinicians and brain scientists, who have gone on to be leaders in cognition, stroke and dementia across the country.

While there are drug therapies available to help treat some of the symptoms of AD or other dementias (once those symptoms have already developed), there are limited medical options to address prevention, before the disease takes hold.

Yet Dr. Black has never been more optimistic.

Never before did we have the option or possibility of altering the pathway in which dementia develops. Now we’re actually looking at the pathology itself that leads to brain cell damage and cognitive decline. This is an emerging field and we’ve learned the sweet spot in preventing or slowing down Alzheimer’s disease is well before symptoms start.

Sandra Black,
Scientific Director, Dr. Sandra Black Centre for Brain Resilience and Recovery,
Sunnybrook Research Institute (SRI) and
Officer of the Order of Canada

She explains how the focus of therapies in their clinical trial research now is to intervene before the toxic processes behind the disease begin to form – a minimum of 10 to 15 years before symptoms kick in and “have a life of their own”, spreading in the brain.

“If we can do that, then you’re going to avoid it (dementia developing). It’s like stroke prevention: you get worked up, and put on prevention therapies, so you don’t have a stroke.”

The comparison should not go unnoticed, considering that she and her colleagues at Sunnybrook’s stroke clinic were one of the first to provide stroke prevention therapies in Canada in the 1990’s.

For the time being, volunteering to participate in a clinical trial is often the best option for patients like Cindy to access therapies that are not yet available “clinically”; in this case, a drug therapy in an effort to prevent or offset the very start of the disease process.

Receiving the drug, however, is not a guarantee as clinical trials are often randomized and blinded, which means volunteer participants are either selected for the drug therapy itself, or a “placebo” instead – the latter usually is just a saline solution – so Cindy and the research team don’t know which group she falls in.

“There has to be this placebo comparison in order for the study to be controlled, in order to validly test for any effects and differences – good or bad – of a drug being studied,” explains Halil Akbulut, clinical research coordinator in the Hurvitz Brain Sciences Program at Sunnybrook.

Without people like Cindy and her study support partner, we wouldn’t make any progress at all. They’re contributing to our understanding.

Cindy will continue to be closely monitored and tested for the duration of the study. Her sister Debbie is her “study partner”. In addition to providing a supportive role to Cindy, Debbie is part of her “team”, sharing any cognitive, physical or emotional changes she observes while outside the hospital setting. Changes to cognition can include thinking processes such as attention, learning and memory, language, remembering, reasoning, and problem solving.

If Cindy’s cognition or overall health declines, she will be pulled from the study. If it’s found that she was on the placebo, she will be offered the drug therapy as part of the agreement as a participant of the study. If she was on the drug arm of the study, she will continue to be offered it, for as long as she and her care team decide to use it.

I’m learning so much through this study, I’m learning how to eat better, how to sleep better, interacting more with people; so it’s giving me a lot of tools that I can put into place now while I’m going through the study, and I know it will make a difference in my life, to a better quality of life.

When asked if she had any advice to offer others who may be considering a clinical trial, Cindy added:

“If there are clinical studies available, sign up. It helps to find out as well genetically whether you have a predisposition – a higher probability of getting the disease – so there’s so many good points about being part of a study. I encourage people to find out if anything is happening in your community – I’m commuting myself – it’s worth the while to do that.”

The post Igniting Discovery: Can we stop dementia in its tracks, before it starts? appeared first on Your Health Matters.

In recent years, Sunnybrook has focused on developing and implementing age-friendly care strategies across the hospital. Here are some of the ways we are providing safe, high-quality, individualized care for older adults.

Individualized care plans

Providing age-friendly care begins with understanding and aligning with each patients’ goals, values and preferences. At Sunnybrook, teams start by asking older patients what matters to them and how we can enhance their care experience.

Whether staff are in the early stages of developing a care plans, preparing a patient for discharge or discussing end-of-life care, these conversations allow our teams to provide dignified, compassionate, respectful care that personalizes to each patient’s unique wants and needs.

Senior-Friendly Champions

To provide increased support to older patients, any and all Sunnybrook staff have the opportunity to become a Senior-Friendly Champion. Senior-Friendly Champions are staff that have received additional education on how to support and care for older patients in a dignified manner. Senior-Friendly Champions work on-unit with patients and their families to ensure their needs are met while in hospital.

Healthy Stay Volunteers

The Healthy Stay Volunteer program is another way we support older patients while staying in hospital. Our Healthy Stay volunteers work with older patients to ensure they maintain a healthy mind and stay physically active.

Healthy Stay Volunteers assist with everyday tasks such as helping older patients make phone calls, assisting with food trays and ensuring patients get up and moving. Volunteers also offer companionship, visiting patients to complete a puzzle, read a book, or have a conversation.

Family and caregiver education

Supporting an older adult can be hard on family members and caregivers. To ease this burden, Sunnybrook offers comprehensive educational courses and training to family members and caregivers or older adults through the Senior Friendly Portal.

Through the portal, family members and caregivers can learn about the importance of maintain mobility, keeping patient hydrated and how to prevent physical and mental decline during hospital stays. Offering these resources means family members and caregivers can play a more active role in patient care.

Proper use of medication

Understanding a patient’s full medication history is another way we are working to support older adults. To do this, staff gather information from multiple sources including the patient, family members, caregivers, pharmacies and medical records.

Care teams focus on minimizing risks associated with the use of multiple medications by assessing both the short and long-term effects, the patients care goals, preferences and life expectancy. By doing this, we are able to accurately prescribe and de-prescribe medication to make sure we meet the patients evolving care needs.

Looking to the future

Prioritizing age-friendly care is not only essential in response to our aging population, but also a core principle that guarantees every older patient received the compassionate and dignified care the deserve throughout Sunnybrook.

By integrating age-friendly practice and policies, Sunnybrook is empowering its staff, physicians, students and volunteers with the knowledge and skills to provide exceptional care for older adults. As our populations ages, Sunnybrook is proactively preparing to meet the needs of older adults with confidence and commitment.

The post Preparing for the Future: How Sunnybrook is Prioritizing Age-Friendly Care appeared first on Your Health Matters.

Complex concerns come with determining when it’s time to hang up the keys: How can this topic be approached in a respectful way with loved ones? Can a plan be created for the future so that the person with dementia can continue to enjoy activities after they’ve decided to stop driving?

Dr. Mark Rapoport, geriatric psychiatrist, acting head of Geriatric Psychiatry at Sunnybrook, and one of the researchers behind a new Canadian online resource called the Driving and Dementia Roadmap shares insight into how individuals with dementia and those close to them can face this challenge together.

What is dementia?

Dr. Rapoport: Dementia occurs when a person experiences changes or a decline in memory, and the ability to think, problem solve, or make decisions, that are significant enough to affect their daily life and everyday activities. Although dementia is most common in older adults, it is not a ‘normal’ part of aging.

The Alzheimer Society of Canada says dementia impacts more than 600,000 people in Canada. It’s estimated that by 2030, one million Canadians will be living with dementia.

When is it time for a person with dementia to stop driving?

Dr. Rapoport: Some concerns around driving that are common with dementia can include forgetfulness or getting lost in familiar places. If a person is feeling unsure or anxious while driving or if there are any safety concerns expressed by family or friends about the individual’s driving abilities, it is important to seek information and the advice of a healthcare professional for next steps.

Some individuals with mild dementia may continue to drive safely and some may have to stop driving right away. It’s important to be aware that as the disease progresses, they will inevitably have to stop driving. It can be difficult to know exactly when driving has become or will become unsafe.

After receiving a dementia diagnosis, it is critical for the individual and their family to watch for changes in that person’s driving and consider whether they can continue to drive safely.

For people with moderate or severe dementia, driving is dangerous as the brain functions needed to react quickly and make rapid decisions for safe driving have deteriorated. By these stages, driving must stop.

What is the Driving and Dementia Roadmap?

Dr. Rapoport: The Driving and Dementia Roadmap or drivinganddementia.ca, is a free, online, and Canadian resource created to help older adults living with dementia, their family, friends, and healthcare teams, and provide them with information around the decision to stop driving.

The Driving and Dementia Roadmap was developed by researchers from Sunnybrook, Baycrest, and the Canadian Consortium of Neurodegeneration in Aging.

I have been working in the field of geriatric psychiatry for many years, and over time patients and families identified the need for easily accessible and credible information about driving and dementia and driving cessation. This is the first time that helpful materials have been curated into a one-stop-shop website that includes resources useful for all provinces and territories across the country.

The Driving and Dementia Roadmap website includes information, videos, worksheets, as well as strategies to help people living with dementia and their families navigate the challenging conversations, emotions, and planning that comes with the decision to stop driving.

Making a plan for the future

Driving cessation is a major life change for a person with dementia. There are often concerns about a loss of independence or identity.

It is important to include the individual with dementia in discussions about driving. This can help in creating a plan and making alternative transportation arrangements for when the person can no longer drive. The website provides strategies to ensure that the person with dementia continues to live a fulfilling life even after driving stops.

The Driving and Dementia Roadmap website doesn’t provide individuals with recommendations about their driving. It is for educational and informational purposes. Patients and families are strongly encouraged to reach out to a qualified healthcare provider with any concerns for their guidance, advice, and support as they navigate the driving and dementia journey.

Read the news release to learn more about the Driving and Dementia Roadmap.

For more information go to: drivinganddementia.ca

The post Driving and dementia: How to know when it is time to stop driving appeared first on Your Health Matters.

All of the things that the brain is responsible for – physical and mental – are part of brain health. While often spoken about separately, mental health is a central part of brain health – they are not separate or distinct.

Mental health is brain health.

Understanding this can help to reduce the stigma that continues to be associated with mental illness, which, like any physical disorder or disease, is a health problem and requires appropriate treatment.

One of most important things that people don’t often realize is that the three major brain conditions of our lifetime; stroke, dementia, and depression, are all inter-related. They are all happening in the same organ, and if person has been diagnosed with one of those three conditions, their risk of the other two conditions increases.

That is to say: if an individual has a stroke, it increases their risk of having post-stroke depression and developing dementia; if someone has dementia, there is an increased risk of developing depression and having a stroke; and having clinical depression, increases the risk of going on to have stroke and/or dementia.

What affects brain health

Any disruptions to the brain can affect the way it works. The brain is an incredibly vascular organ – there are a rich supply of arteries and veins that help with the delivery of nutrients to the brain, as well as the removal of toxins and by-products of metabolism, to keep it healthy.

When that blood flow is interrupted, it affects brain function and that results in changes in the way information travels along the brain’s pathways. This can impact how we move, how we sense things like hearing or touch, the way we think about the world and people around us, how we perceive a situation, and how we behave.

It is important that brain conditions are understood and treated from multiple perspectives at the same time. Traditionally, the various medical specialties that deal with brain conditions would treat disorders individually; for example, if a person has a stroke and needs a blood clot removed, they will be seen by a neurosurgeon or neurologist. If a person has depression, they will be treated by a psychiatrist. If a person has dementia, they might see a neurologist or a psychiatrist.

But the new way of understanding and treating brain conditions involves a broader and more collaborative approach.

A multi-disciplinary approach to brain health

Sunnybrook’s Garry Hurvitz Brain Sciences Centre will connect brain health experts from across medical disciplines in the same building.

Bringing brain specialists together to collaborate with one another will help enhance a patient’s treatment, education, and will pave the way for possible new discoveries of the causes and potential treatments of brain conditions.

For stroke, depression, dementia, and other brain conditions, including sleep disturbances, anxiety, Amyotrophic Lateral Sclerosis (ALS), tremor, and others – having a broad range of the brain specialities and disciplines, including neurology, neurosurgery, psychiatry, psychology, and more, working together for improved patient care, is really the way of the future.

For more information about brain health:

• Learn more about Sunnybrook’s Garry Hurvitz Brain Sciences Centre
• Q & A with Dr. Levitt about Sunnybrook’s Garry Hurvitz Brain Sciences Centre
• Learn more about the Hurvitz Brain Sciences Program at Sunnybrook

If you need help in an emergency, please call 911 or visit your local emergency department.

If you’re feeling like you’re in crisis or need somebody to talk to, please know that help is also available through community resources:

• Find a local crisis resource at sunnybrook.ca/gethelp
• Crisis Services Canada
  • Phone: 24-hour, toll-free 1-833-456-4566
  • Text: 45645 (4:00 p.m. – midnight Eastern Time)
• Kids Help Phone
  • Phone: 24-hour, toll-free, 1-800-668-6868
  • Text: 686868 (24 hours, 7 days a week)

The post Why mental health is brain health appeared first on Your Health Matters.