Concluding Remarks for Another Year of the Dementia Awareness Program

As we come to the end of our fourth year of the Dementia Awareness Program, we are happy to say that we have been able to carry on our vision of raising awareness and addressing the stigma surrounding dementia through this blog and our dedicated student team who volunteer at a local seniors’ residence weekly. 

We are now in our fourth year of the community partnership between Havergal College and Briton House retirement home in Toronto, Canada. A group of six students and two dedicated advisors visited residents living with dementia weekly. Throughout our time together, we got to know the residents by chatting one and one with them and in small group settings. This year, we added some new popular activities during our visits, such as knitting, board games, and mail delivery. Knitting was new for some of the students, but the residents were great teachers! By delivering mail - such as letters, magazines, and postcards - to the residents' rooms, we were also able to reach out and have a great conversation with other residents at the retirement home that we did not get to interact with during our weekly visits. The residents seemed to really enjoy this time with us! Another exciting activity this year was a singing performance by our students that turned into a sing-along with the residents' favourite childhood songs like "Unto the Hills". This was a big hit and many residents came up to us afterwards to say how much they enjoyed and appreciated the sing-along. Interestingly, some of the residents were alumni from our school, Havergal College, and we were able to hear fun stories about their time at Havergal and favourite school events. Our weekly visits to Briton House impacted not only the seniors' lives, but also our lives significantly. It was such an amazing opportunity and we cannot wait to come back next year!

On behalf of the Dementia Awareness Program, we would like to thank all of our student volunteers and teacher advisors from Havergal College for their dedication and ongoing support this year. We would also like to sincerely thank the residents and staff at Briton House for allowing us to visit weekly and create countless memories together. 

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 resources and support available for dementia patients and caregivers through Canadian organizations, as well as the National Dementia Strategy. For those of you who are affected by dementia directly or indirectly, we hope that our blog series has introduced you to helpful resources that you can use or get involved with. 

Lastly, we would like to sincerely thank Dr. Herrmann for his continued support and guidance over the program and this blog for the past four years. Most notably, we would like to thank him for sharing his insight with all of us and providing a clinician / researcher’s perspective on Canada’s first ever National Dementia Strategy.  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!

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

Expert Commentary: Canada’s National Dementia Strategy – 5 Implementation Pillars

In our last two posts in December and February, we partnered with Professor Nathan Herrmann to showcase Canada’s first ever National Dementia Strategy and he provided a clinician’s perspective on the strategy’s 5 fundamental principles and 3 national objectives. In our final post of this series featuring Canada’s national dementia strategy, we have invited Professor Herrmann to provide his input and commentary on the 5 underlying pillars which are identified in the strategy as “essential for implementation, for upholding the principles and achieving the national objectives.

1. Collaboration — Achieving progress on the strategy is a shared responsibility among governments, researchers, community organizations, people living with dementia, caregivers and many others
2. Research and innovation — Promoting research and innovation will address knowledge gaps and develop therapies that will improve the quality of life of people with dementia and caregivers, and move us towards a cure
3. Surveillance and data — Enhanced surveillance and data will help us to understand the scope of dementia in Canada, and focus our efforts and resources where they are most needed and will be most effective
4. Information resources — The development of culturally appropriate and culturally safe information resources on dementia will facilitate the work of care providers to provide quality care and will help all Canadians to better understand dementia
5. Skilled workforce — Having a sufficient and skilled workforce will support dementia research efforts and provide evidence-informed care, which will improve the quality of life of people living with dementia and caregivers”

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

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 530 publications and 130 research grants, Dr. Herrmann is a world leading expert on dementia and Alzheimer’s.

Clinician’s Perspective

The importance of the development of culturally appropriate information resources on dementia may not seem self-evident at first glance. After all, aren’t the problems associated with dementia including memory and cognitive deficits, impairment in activities of daily living and potential behavioral issues such as agitation and depression, the same for everyone regardless of culture? The answer is, definitely not. While many cultures have significant negative stigmatizing beliefs associated with dementia, others may normalize the symptoms of dementia and therefore not search out treatment. Two populations which require far more emphasis on developing appropriate information and data are the Indigenous and the LGBTQ populations. Little is known about the effects of dementia in Indigenous populations and they are a seriously under-serviced population when it comes to mental health in general, and particularly cognitive disorders in late life. There has recently been particular concerns raised about the stigma and its negative consequences on care which can occur when people from the LGBTQ community are admitted to long-term care facilities. In extreme situations, this has even led to some people having to go “back into the closet” in order to receive appropriate compassionate care.

Which leads to considering the last pillar – the skilled workforce. All professionals and non-professional caregivers will benefit from special training to deal with patients who have cognitive impairment. This includes special communication skills, techniques to ensure optimizing their activities of daily living while allowing them to be as independent as possible, and interventions to deal with behavioral problems if they arise. Nowhere is this more important than it is with staff in long-term care facilities like nursing homes. Residents of nursing homes tend to be moderately to severely effected with dementia, have the greatest physical care needs, and are most likely to develop problems with agitation and aggression. Numerous studies have shown that caregiver and staff education can lead to improvement in behavior in people with dementia, the avoidance of psychiatric medications, and improvements in caregiver stress. These educational interventions however require adequate funding and an investment of time and resources which to date have not been sustainable in many places in Canada. 

Nathan Herrmann MD FRCPC

Professor, Faculty of Medicine, University of Toronto

Lewar Chair, Geriatric Psychiatry

Head, Division of Geriatric Psychiatry

Sunnybrook Health Sciences Centre

Expert Commentary: Canada’s National Dementia Strategy – 3 National Objectives

Canada’s national dementia strategy is aimed at advancing dementia prevention, research, and care provided to individuals with dementia and their caregivers. This strategy is guided by 5 principles, which we covered in a previous post in December 2019, as well as 3 national objectives – which are as follows:

“ 1. Prevent dementia

   2. Advance therapies and find a cure

   3. Improve the quality of life of people living with dementia and caregivers”

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 were fortunate to have the opportunity to ask Professor Nathan Herrmann for his expert opinion and commentary on these 3 national objectives outlined in Canada’s national dementia strategy.

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 530 publications and 130 research grants, Dr. Herrmann is a world leading expert on dementia and Alzheimer’s.

Clinician’s Perspective

The 3 national objectives from Canada’s dementia strategy mentioned above are certainly laudable, though one could be forgiven for being somewhat cynical. After all, the era of Alzheimer’s disease therapeutics is now over 40 years old, and all we have to show for these efforts are 4 drugs (donepezil, galantamine, rivastigmine, memantine) that are modestly effective at best. These drugs do not prevent Alzheimer’s disease, nor do they halt progression of the illness. Unfortunately, there have also been a very large number of drugs and vaccines that have failed in spite of promising preliminary results and sound theoretical basis. We are constantly reminded that what works in rat brains, may not necessarily work in human brains! These failures have had significant consequences, and a number of the large pharmaceutical companies have decided to withdraw from Alzheimer’s disease research believing it is too risky.

And yet, there is reason to remain optimistic. There is good reason to believe that non-drug treatments like exercise, mentally stimulating activities, dietary changes, management of cardiac risk factors including blood pressure, alone and in combination, can improve cognition and perhaps delay onset of dementia. It is estimated that by finding a treatment which delays the onset of Alzheimer’s disease by as little as 5 years, we could cut the prevalence of the illness in half!

Improving the quality of life of for people with dementia and their caregivers is an equally important objective. There will not be a cure found tomorrow, and so we must still deal with the over half a million Canadians that already suffer from the disease. Being a caregiver for people with dementia is a ‘hazardous profession’ as these individuals are at high risk for burn-out, depression and multiple medical illnesses. We must work to discover the best way to provide education and support for patients and their families in order to ease the burden and optimize their quality of life.

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: 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/