Featured Organization: Canadian Consortium on Neurodegeneration in Aging

We recently had the opportunity to interview Victor Whitehead from the Canadian Consortium on Neurodegeneration in Aging on the work their organization does in Canada to drive research in this field. We would like to sincerely thank Mr. Whitehead for taking time out of his busy schedule to speak with us.


1. Tell us about your organization – who you are, what you do, and what your mission is.

We are the Canadian Consortium on Neurodegeneration in Aging (CCNA). This entity has been in existence since 2014 and is a network of over 310 Canadian scientists in 19 teams that are collaborating on research aimed at preventing, treating, and curing age-related neurodegenerative diseases (NDD), and on improving the quality of life of people living with dementia.  

2. Why is dementia research important, and what are the current areas of focus for research in this field today?

While tremendous strides have been made in understanding the development and presentation of dementia, an effective treatment has not yet been developed. As the segment of the population over 65 grows, the number with dementia will also grow. According to the Alzheimer Society of Canada, it is expected that by 2031, 937,000 Canadians will be living with dementia, a 66% increase over the present day. The cost of caring for those with dementia is expected to increase from $10.4 billion per year at present to $16.6 billion by then. These statistics highlight the urgency to find effective ways to prevent and treat dementia.

At CCNA, we believe that it is important to approach the challenge of dementia from as broad a perspective as possible, so we have people working on discovering the mechanisms of dementia and how to block them, others are working on ways to identify dementia markers before symptoms occur, and others are looking for ways to minimize its impact once it is present. As well, we have programs focussed on prioritizing certain aspects within our research such as how dementia impacts the sexes differently and why (Alzheimer’s disease affects more women than men, while Parkinson’s disease, especially with cognitive decline, affects more men than women); how to eliminate the stigma associated with dementia; and how to help improve the awareness and involvement of indigenous peoples in our research program.

3. What programs and resources are available through your organization?

We have a website (http://ccna-ccnv.ca) where people can learn more about who we are and the work we are doing. On there, we have a “contact us” link where one can ask for specific information and we will respond with what we know and pertinent programs and resources that may help.

4. How can interested individuals or groups support your organization and the amazing work you are doing?

The government recently introduced a National Dementia Strategy which aims to greatly increase Canada’s response to the challenge of dementia through increased funding of care and research. We encourage everyone to let their local government representatives and candidates know that they support the National Dementia Strategy and wish to see it fully funded (https://alzheimer.ca/en/Home/Get-involved/Advocacy).

As well, we are presently recruiting participants for a study we are doing across the country to extend our understanding of what is occurring as dementia develops and progresses. The study is called the Comprehensive Assessment of Neurodegeneration and Dementia (COMPASS-ND) study and more information about it can be found at http://ccna-ccnv.ca/compass-nd-study/. In addition, we will soon be beginning a study looking at different ways to prevent the development and progression of dementia to determine which method, or combination of methods, is the most effective. The details of this study and how/where to enroll will be on our website in the coming months. 

Expert Commentary: Canada’s National Dementia Strategy – 5 Principles

On June 17, 2019, Canada published its first National Dementia Strategy, joining many other countries worldwide who have already developed and implemented National Dementia Strategies. Canada’s strategy is centered around its vision to create “a Canada in which all people living with dementia and caregivers are valued and supported, quality of life is optimized, and dementia is prevented, well understood, and effectively treated”. 

“Key to achieving this vision are 5 principles setting out values to guide the implementation of efforts in support of the national objectives and their areas of focus. In implementing the strategy, governments, non-governmental organizations, community organizations and others working on dementia should:

1. Prioritize quality of life for people living with dementia and caregivers;
2. Respect and value diversity to ensure an inclusive approach, with a focus on those most at risk or with distinct needs;
3. Respect the human rights of people living with dementia to support their autonomy and dignity;
4. Engage in evidence-informed decision making, taking a broad approach to gathering and sharing best available knowledge and data; and
5. Maintain a results-focused approach to tracking progress, including evaluating and adjusting actions as needed.”

Taken from “A Dementia Strategy for Canada: Together We Aspire”: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html

We had the privilege and opportunity to ask Professor Nathan Herrmann for his expert opinion and commentary on these 5 principles which the National Dementia Strategy are based around.

Professor Herrmann is the Richard Lewar Chair in Geriatric Psychiatry at Sunnybrook Health Sciences Centre and the University of Toronto. At Sunnybrook, he is Head of the Division of Geriatric Psychiatry, co-director of the Clinical Neuropharmacology Laboratory, and a scientist in the Hurvitz Brain Sciences Research Program and the Center for Stroke Recovery. With over 700 publications and 150 research grants, Dr. Herrmann is a world leading expert on dementia and Alzheimer’s.

Clinician’s Perspective

A year before release of Canada’s national dementia strategy introduced above, Selina Chow and I published a review in the Canadian Geriatric Journal titled: National Dementia Strategies:

What Should Canada Learn? (DOI: https://doi.org/10.5770/cgj.21.299). In that paper, we reviewed the national dementia strategies of the other 29 countries that had previously developed such strategies. That’s right – at least 29 other countries beat Canada to the punch in terms of planning for these neurodegenerative disorders that have such devastating effects on patients, their families and on society as a whole. In spite of that, I’m pleased to say “better late than never” and for the most part, the strategy hits on most of the aspects that all good, comprehensive plans to deal with these illnesses should include. These aspects include increasing awareness of dementia, reducing its stigma, identifying support services, improving the quality of care, as well as improving training and education and promoting research.

The 5 principles described above might seem self-evident to people whose lives have been touched by dementia, but they are worth reflecting on. The principle of quality of life is crucial when considering dementia. While there is still no cure in sight for Alzheimer’s disease and other dementias, there is much that can be done to improve quality of life for patients and their families and a focus on “living well with dementia” must take priority over pessimistic and nihilistic attitudes that pervade many in our society, including health care workers like physicians and nurses. As a scientist and clinician looking after patients with dementia, I am particularly pleased with the principle of evidence-informed decision making. This implies that management of these illnesses should be based on solid research studies that consider both the efficacy and side-effects of all treatments. When patients and families are faced with Alzheimer’s disease, they will often look to unproven treatments they hear about from friends or read about on the internet, which is problematic from many perspectives. These treatments can be costly, are likely to be ineffective, and they may result in unexpected and dangerous side-effects. They can cause the patient to avoid or delay treatment with proven (though only modestly effective) standard therapies. Finally, the false hope they engender in patient and caregiver can be devastating. I firmly believe that patients would be better off participating in a clinical trial under close supervision, and contributing essential knowledge to science, rather than wasting their time with unproven treatments. The principles of valuing diversity and human rights are hard to argue with. Finally, adopting a “result-focused” approach to evaluating the dementia strategy is crucial, in order to ensure we are spending our money wisely and actually improving the care of people with dementia and their families.

Nathan Herrmann MD FRCPC

Professor, Faculty of Medicine, University of Toronto

Lewar Chair, Geriatric Psychiatry

Head, Division of Geriatric Psychiatry

Sunnybrook Health Sciences Centre

Featured Organization: Alzheimer's Disease International

As part of our blog series for 2019-2020, our blog is centered around the resources and support available for dementia patients and caregivers from community organizations and the government. In particular, we are featuring several national and international organizations dedicated to helping patients and their families with the disease, including research, healthcare delivery, education and advocacy. 

We were fortunate to be able to speak with Annie Bliss and Taylor Paatalo from Alzheimer's Disease International (ADI) on the work their organization does globally to raise awareness of dementia. 

1.   Tell us about your organization – who you are, what you do, and what your mission is.

ADI was established in 1984, by 4 founding associations - Canada, United States, United Kingdom and Australia - a small group of people determined to give a better quality of life to those living with dementia and those caring for them – and to gain an international advocacy voice. Since then, ADI has gone on to become the umbrella foundation for 100 Alzheimer associations and federations throughout the world. 

As an international charity, ADI is heavily involved in support, education and advocacy. Some of the ways that ADI does this include; producing an annual World Alzheimer Report with the latest findings in the field; assisting the development of Alzheimer associations through our unique ‘Alzheimer Universities’ training programmes; and leading on the global World Alzheimer’s Month campaign each September. Most importantly, we try to involve people living with dementia in all of our work and much more. 

Our mission is to advocate for persons living with dementia and their carers, as well as raise global awareness around dementia, build and strengthen other Alzheimer’s associations and stimulate research – particularly in low and middle-income countries where stigma remains prevalent throughout healthcare systems and the general public.  

2. Given that Alzheimer’s Disease International is a worldwide federation of Alzheimer’s associations, what are your organization’s focuses and priorities for dementia globally?  

Following 10-years of advocacy to establish dementia as a global priority, ADI’s strategic focus switched following the 2017 launch of the WHO Global action plan on the public health response to dementia 2017-2025. A primary objective now is in ensuring governments deliver against their commitment to this plan.

ADI works at a multilateral level including being in official relations with the WHO and in 2019 we have worked specifically on influencing the G20, under the Japanese presidency, to ensure that dementia was included in this year’s Osaka summit declaration.

3. What services are available through your organization for individuals with dementia, their families, and/or caregivers? How can interested individuals access your resources or get involved with your services? In particular, are there any services provided locally in Canada?

Our website offers an abundance of information and resources for individuals who are living with dementia, as well as their loved ones and caregivers. The information on our website ranges from detailing what dementia is, to insights into clinical trials, the latest statistics on dementia and innovative care developments. The resources we offer, all free, also range from a monthly newsletter, factsheets, booklets, a decades’ worth of our annual World Alzheimer Report and more.  

In addition, our website holds a directory of Alzheimer associations around the world. These associations typically provide information, support and services that are tailored to the country in which they are based, as well as offering more information about local chapters and branches of Alzheimer associations in their respective country.

For services and resources based in Canada, we recommend looking at our member Alzheimer Society of Canada’s website, which includes a directory for Alzheimer societies throughout Canada. 

4. Why is dementia awareness important, and how should we as a society work towards increasing public awareness of dementia?

One of the most common misconceptions of dementia is that it is an inevitable part of aging. Rather, dementia is a progressive, chronic disease which affects over 50 million people throughout the globe, with somebody developing dementia every 3 seconds. By bringing awareness to the stigma and misconceptions that surround dementia globally, we can begin to effectively support those who are affected by dementia, as well as begin to advocate for real change. 

As a society, there are several things we can do to help increase public awareness of dementia. One of the most simple and effective tactics is by having a conversation around dementia and educating ourselves in the process. Another way is to increase public awareness by getting involved in World Alzheimer’s Month each September, whether it’s through sharing a key message on social media or volunteering with your local Alzheimer’s association.

Public health campaigns will be vital going forward, to improve awareness and also to communicate key risk reduction messaging. All 194 WHO Member States have signed up to deliver at least one national awareness campaign as part of the Global action plan on dementia. However, much more is needed to help normalise the language around dementia, demystify and diffuse the fear so that people actively seek out help, advice, information and support.

5. How can interested individuals or groups support your organization and the amazing work you are doing?

ADI appreciates any support it receives, whether it big or small. Simply by signing up to receive our monthly newsletter will keep people up to date on developments globally, in research, care, rights and in national plan responses. We want to hear from individuals and groups that are making a difference and innovating around dementia. We can amplify and broadcast these stories to a global audience.

Joining one of our global or regional conferences is an excellent way to share experiences and to hear about the most up to date developments. The 34th International Conference of ADI in Singapore in March 2020 is the next global gathering of the ADI family.

Follow us on social media too. We share some truly inspirational stories from around the world.   

National Dementia Strategies: The Single Most Powerful Tool to Transform Dementia Care

According to the World Health Organization, there are currently around 50 million people worldwide living with dementia, with nearly 10 million new cases each year. By 2030, there will be an estimated 82 million people with dementia around the world, and 152 million by 2050. 

Dementia is one of the most common causes of disability among older adults, and has physical, psychological, social, and economic impacts on the individual, their caregivers, families, and society. As the prevalence of dementia increases, so do the costs and burdens associated with this illness. In fact, Chow et al (2018) reported that the total estimated global cost of dementia in 2015 was 818 billion USD, accounting for 1.09% of the world’s GDP. 

With the increasing incidence and impact of dementia on society, many countries around the world have developed a National Dementia Strategy as an official government policy to prioritize and carry out specific initiatives in order to better support individuals with dementia and their caregivers. Most recently, in 2017, Canada announced that it will become the 30^thcountry to adopt a national strategy for dementia. This past June 2019, the Canadian government published its first ever National Dementia Strategy.

In light of this recent development, our team examined the existing 29 strategies worldwide and published a review, “National Dementia Strategies: What Should Canada Learn?” in the Canadian Geriatrics Journal (Chow et al., 2018). We have included a portion of our review below, as it captures the heart of what a National Dementia Strategy is.

"In order to address this changing demographic, many countries are adopting a National Dementia Strategy (NDS) as a comprehensive government plan to provide appropriate medical care for people with dementia. A government dementia plan is a policy whereby the national government holds itself accountable to carry out its stated specific objectives and policy changes, although objectives can be accomplished with non-governmental collaborators... Created using input from various stakeholders (i.e., government agencies, legislators, residential and community care providers, professional and family carers, researchers, physicians, and people with dementia), the NDS is tailored specifically to the unique culture and demographics of each country to address a range of issues. Common priorities for NDSs include: raising awareness of the disease, combating stigma, identifying support services, quantifying the number of individuals with dementia, assessing and improving the quality of dementia care, and assessing the availability and access to diagnostic services. These strategies have been well-received and reported as the single most powerful tool to transform dementia care and support within a country."

In the coming months, we will be taking a deeper look at Canada’s newly developed National Dementia Strategy and what it means for Canadians living with dementia and their caregivers / families. We are looking forward to exploring this exciting area with you all soon!

For more information on the current statistics and incidence rates of dementia, please refer to the World Health Organization here: https://www.who.int/news-room/fact-sheets/detail/dementia

For our review on the 29 previously published National Dementia Strategies, please see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6028171/

Welcome Back for our Fourth Year of the Dementia Awareness Program

This year marks the fourth year of our Dementia Awareness Program – a unique partnership led by Professor Nathan Herrmann and a group of high school students and alumni at Havergal College in Toronto, Canada. In September 2016, we created this program with the aim of raising awareness of and de-stigmatizing dementia both among our peers and school community, while also extending our work to the wider community. Since then, we have been fortunate to work closely with and be mentored by Professor Herrmann – the Richard Lewar Chair in Geriatric Psychiatry at Sunnybrook Health Sciences Centre and the University of Toronto.

With our vision to champion dementia, the Dementia Awareness Programprovides students the opportunity to enrich the lives of seniors with dementia. Each week, our two student leaders coordinate a group of dedicated volunteers to visit a local seniors’ residence, where each student is paired up with an individual with dementia. As we gain first-hand experience working with people with dementia, we have taken the initiative to share what we have learned about dementia and the current research in the field on our blog throughout the past three years. We are proud to be international ambassadors for dementia by increasing awareness of this important illness via our blog, which has received over 3,500 visits from readers all over the world.

We are looking forward to continuing the Dementia Awareness Program this school year through both our blog here and the community partnership between Havergal College students and a local seniors’ residence. 

Our monthly blog series this year will shine a spotlight on the community by raising awareness of the resources and support available for dementia patients and caregivers from Canadian organizations and the government. In particular, we will be featuring Canada’s recently published National Dementia Strategy, along with national organizations dedicated to helping patients and their families through research, healthcare delivery, education and/or advocacy.

We hope that you are as excited as we are to explore the resources and support available in the community for individuals and families affected by dementia. Together, we can work to restore some of what dementia takes away.

You can also follow Professor Herrmann’s “Memory Doctor” blog for dementia caregivers at: http://health.sunnybrook.ca/memory-doctor/

Professor Nathan Herrmann and Student Executive Team

Chair               Selina Chow

Vice-Chair       Sae Furukawa

Vice-Chair       Katie Taub

Nathan Herrmann MD FRCPC

Professor, Faculty of Medicine, University of Toronto

Lewar Chair, Geriatric Psychiatry

Head, Division of Geriatric Psychiatry

Sunnybrook Health Sciences Centre

Concluding Remarks from Professor Nathan Herrmann and Student Executive Team

This year marks the third year of successfully running the Dementia Awareness Program at Havergal College. An enthusiastic group of 8 new and experienced student volunteers and 2 dedicated advisors travelled to Briton House retirement home in Toronto weekly on Wednesdays to visit residents with dementia. Each week, our volunteers meet with various residents and played card games, did puzzles, had conversations, and enjoyed each other’s company. The residents certainly seemed to enjoy and look forward to our visits, as did our student volunteers. The student volunteers learned a lot by improving their communication and problem solving skills all while having fun and forming intergenerational relationships. 

A highlight of this year was our music performances! Our student volunteers performed various songs accompanied by our teacher advisor on the keyboard. Even though we were not the best of singers, the residents greatly enjoyed our performance and many stopped to listen, clap and even sing along. We even met with a former Havergal graduate and her son who stopped by to introduce themselves after our performance! 

On behalf of the Dementia Awareness Program, we would like to thank all of our student volunteers for their dedication to this program. We would also like to thank our staff advisors from Havergal College for their continual support. Finally, thank you to the staff at Briton House for allowing us to visit weekly and for all of their support in this partnership. 

To our readers, thank you for following our monthly blog series this year, and we hope that you have been able to learn more about the exciting new research surrounding dementia, as well as getting to know some of the prominent local female scientists in this field through our researcher profiles. We would like to sincerely thank Dr. Herrmann for his continued support and guidance over the program and this blog. Additionally, we would like to thank him for connecting us with the researchers and scientists featured in our researcher profiles – who have inspired and taught us so much about the importance and need for dementia research. For more information on dementia, you can also follow Dr. Herrmann’s “Memory Doctor” blog for dementia caregivers at: http://health.sunnybrook.ca/memory-doctor/

On behalf of all the Havergal College students involved in this program, thank you for your continued support and engagement with the Dementia Awareness Program. We look forward to another successful year of the Dementia Awareness Program next year, as we continue to raise awareness of this illness and visit individuals with dementia weekly to engage them in meaningful interactions. 

Professor Nathan Herrmann and Student Executive Team

Chair                Selina Chow

Vice-Chair        Clarissa Yu

Vice-Chair        Olivia Nadalini

Nathan Herrmann MD FRCPC

Professor, Faculty of Medicine, University of Toronto

Lewar Chair, Geriatric Psychiatry

Head, Division of Geriatric Psychiatry

Sunnybrook Health Sciences Centre

Featured Researcher: Professor Paula Rochon

Dr. Paula Rochon is a geriatrician who is recognized for her work to focusing on dementia management of older adults, especially women. She is a senior scientist and the vice-president of research at Women’s College Hospital. Dr. Rochon leads Women’s Xchange, a research and exchange centre focussing on improving women’s health. She is also a professor at the University of Toronto in the Department of Medicine and Institute of Health Policy Management and Evaluation.  

We were fortunate to be able to interview Dr. Rochon about her work and ask her questions about her work.  

1. What brought up the issue of a need for dementia management research for different sexes?

It is important to consider sex and gender dimensions in all research because these factors serve an important role in affecting a patient’s health, their risk factors, how they experience health care and how health-care professionals provide care. When research studies do not report differences between women and men, we are left with a less valuable view of best practices for proper prescribing techniques, effective treatment methods and outcomes. Research that incorporates and reports data reflective of the whole population benefits everyone. As the Lead of Women’s Xchange, a knowledge translation and exchange centre based at Women's College Hospital designed to promote the development of women's health research across the province, it is a priority for myself and my team to reinforce the need to integrate sex and gender into research. With regards to dementia specifically, it is a condition that disproportionately impacts women. The burden of caregiving also falls more heavily on women, who are more likely to provide care for a parent, relative or spouse with dementia.

2. How is the care for older women with dementia different from men? What are some ways to improve the quality of care of different sexes?

Some of the work that we have done suggests that women are prescribed slightly lower doses of dementia medications relative to men. This may be because women require a lower dose to reduce the development of adverse events. Women generally live longer than men, which means that more women are living alone and may not have someone to provide care for them. This may explain in part why there are substantially more women than men in long-term care homes.

3. How have you seen the treatment of older adults improve over the years?

Over the years, there has been a growing recognition surrounding the importance of sex and gender considerations in research. Having better evidence that is tailored to women and men will result in better treatment for all Canadians. The inclusion of a sex-and-gender lens in health research creates evidence-based, effective and appropriate health-care policies for all.

4. What is the most important factor in improving the care of older adults with dementia?

Many older adults want to remain in their homes.  For this to happen, we need a lot more support in the community, particularly when it comes to caregivers. Caregiving has become increasingly taxing as many untrained people are providing medical and nursing care, assisting with daily living, and navigating the complexities of the health and long-term care system. As well, caregivers often provide financial support to their loved ones and may miss out on full-time employment, raises and other monetary benefits. Improving care for older adults with dementia starts with our caregivers.

5. What are prescribing cascades? What would you suggest doing to improve the issue of prescribing cascades?  

Prescribing cascades occur when a drug therapy leads to an adverse event that is misinterpreted as a new medical condition. This leads to the prescribing of a new drug therapy that may not be required. Prescribing cascades are particularly common in older adults, in part because they are a group that have more medical conditions and therefore may be prescribed more drug therapies. Prescribing cascades have also been identified with the drug therapies that are frequently used to manage dementia. One example is cholinesterase inhibitors, leading to incontinence, leading to the new prescription for a urinary anticholinergic.

 For more information on recognizing and managing prescribing cascades, you can access an article I co-wrote in the Lancet.