Like most Canadians, I’m sure you are feeling the personal and economic effects of the COVID-19 crisis. Please know that the Alzheimer Society gave a great deal of consideration into postponing this newsletter. However, we decided to proceed for two reasons.
One, we feel it’s important for you to know that your support is making a difference in the lives of Canadians affected by dementia right now — people like Leonard and Naome Howe, who lean on the Alzheimer Society when the weight of the disease becomes too much to bear alone, and who need your help now more than ever. And two, because dementia — one of the fastest growing diseases in Canada — will still be a crisis long after COVID-19 has passed. Dementia doesn’t stop, and neither do we.
Thank you for your continued support and for standing with us during this time of uncertainty.
Stephen McCullough
Chief Executive Officer
Alzheimer Society of Canada
My husband Stan was diagnosed with dementia when he was 70. Even though we both knew something was wrong, hearing the diagnosis was heartbreaking. That night we drove back to Grande Prairie in a snowstorm. It just seemed urgent that we get home. Stan kept saying “I’m sorry,” over and over. It was the most helpless feeling in the world.
At first, I was reluctant to seek help. I thought, “I live with this. Why would I want to listen to other people talk about it?” Going to my first Alzheimer Society support group was the best thing I have ever experienced. These are trained people at the Alzheimer Society to whom I can turn– as can every Canadian who is impacted by dementia.
In the last few years, Stan’s health has declined. I do my best to enjoy the good days. And when I need a little extra support, I know where to turn.
To find support programs and services in your area, visitalzheimer.ca.
Recently, my father-in-law was diagnosed with Alzheimer’s disease. Before his diagnosis, I had a strong feeling for quite some time that something was happening and advocated for the family to pursue answers.
In my job as a personal support worker, I care for people with dementia and I know how scary a diagnosis can be for them and their families. Stigma still exists around this disease and can be a struggle for people who are living with dementia and their caregivers.
My family is fortunate in that I have firsthand experience caring for people with the disease. But for many family members who are also caregivers, it can be a very difficult and stressful time.
Here are my tips for caregivers:
Try to put yourself in the shoes of the person with dementia. Don’t forget them. They’re still there.
Even though people with dementia may be non-verbal, they can still hear you.
Be patient and give the person time to process the information and respond.
I feel surrounded by this disease. My mother-in-law, Gert, developed Alzheimer’s disease in her sixties. When she could no longer recognize her husband or family, she was moved to a long-term care home. Shortly after she passed away, my brother-in-law was diagnosed with Alzheimer’s. Then, about 10 years ago, my husband Gerry was diagnosed with dementia. It has now progressed to the point where he needs to go into a long-term care home, which is heartbreaking for me. I became a monthly donor because I want to help prevent this disease from devastating other families. – Reverend B. Duckworth
To become a monthly donor, use oursecure online formor contact Dana Lecours at 1-800-616-8816 ext. 2951.
If you are a monthly donor, we would love to hear your story and reason for giving. Please contact Dana at dlecours@alzheimer.ca.
My whole family comes out each year to support the IG Wealth Management Walk for Alzheimer’s in memory of my grandpa. He was an amazing man, loved by all of his family and friends. In my peer circle, and in my job as a financial advisor, I know of many families who are impacted by dementia.
I am passionate about helping the Alzheimer Society raise funds. Given COVID-19, people living with dementia in their communities need your help more than ever.
Xiomara presenting to her class about the Alzheimer Society
Grade 4 students at a school in Toronto were asked to choose a charity close to their hearts, learn about it and share their learnings with the rest of the class. For her project, Xiomara chose the Alzheimer Society. Our cause touched her heart because her grandmother has Alzheimer’s disease. As part of her presentation, Xiomara created a memory game for her classmates to play.
“The idea behind our project is to find new treatments for Alzheimer’s disease.”
The risk of Alzheimer’s disease increases with age. Dr. Frederic Calon and his team at Laval University are looking at factors associated with aging and which might contribute to the disease. One of those factors is thermoregulation — the process that allows the body to maintain its core internal temperature. As we age, our body’s capacity to regulate temperature often decreases.
Dr. Calon will test existing drugs that stimulate thermoregulation to determine if they can slow the progression of Alzheimer’s disease. If successful in the lab, Dr. Calon estimates they will be able to move quickly to clinical trials, since these drugs already exist.
COVID-19: Tips for people with dementia, caregivers and families
Social distancing and self-isolation present some unique challenges for people living with dementia and their caregivers and families. Here are some tips to help you navigate these challenges:
Have a plan for what you will do if you become unwell. Ask family members, friends or neighbours if they can step if you are unable to continue caring for the person with dementia due to illness or quarantine.
Document instructions for care. Provide detailed information for the person coming in to provide care. Include a list of medications, contact information for doctors, clinics and pharmacies, and the phone number for your local Alzheimer Society.
Ensure you have adequate supplies. Make sure you have enough household supplies and medications on hand for two weeks in case you can’t get to the store or pharmacy. There is no need to stockpile supplies or medications—a two-week supply is sufficient.
Have a plan for people entering the home. Many people with dementia depend on others to help with their daily needs. Have hand sanitizer available for everyone to use before and after the visit.
Maintain a routine. Changes in routine can cause confusion and stress for people with dementia, so it’s important to try and maintain their regular routine as much as possible. Your local Alzheimer Society can advise you on activities that can be done from home.
Practice social distancing, not social isolation. Leverage technology to keep in touch with family and friends. Reach out to staff at your local Alzheimer Society if you need help introducing new technologies.
Reach out for support. If you have questions or need support, contact us. We’re here to help.
Be there for others. We encourage everyone to check in on the caregivers in your community and social circles. Ask if they need help and offer to run errands.
The brain is the most complex organ in the human body; and while we’re putting new pieces together every day, a puzzle of this magnitude takes time to complete. Until then, we need to continue investing in vital research and provide meaningful support to those living with it. That’s where you can make a lasting difference. By leaving a gift to the Alzheimer Society in your will, you can help turn the tide on this rapidly growing health crisis.
Leaving a gift in your will is easy to arrange and has many practical benefits as well, including tax advantages. As always, check with a legal advisor and a tax advisor to ensure that your wishes are being fulfilled.
Randy Steffan, Director, Public Policy and Government Relations, Alzheimer Society of Canada
As Director, Public Policy and Government Relations, I’m responsible for keeping dementia top of mind for our elected officials in Ottawa — persuading them to invest in life-changing dementia research and advocating for policies that support the rights of people living with dementia.
And we have been able to capitalize on our advocacy success. In 2017, working with Disabled Person’s Organizations, the Alzheimer Society was able to ensure that the rights of people with dementia were recognized and protected by the UN Convention on the Rights of Persons with Disabilities, to which Canada is a party. When Parliament adopted the Accessible Canada Act last year, we made sure that cognitive impairment was included in the definition of disability. As part of a coalition, the Alzheimer Society of Canada is also involved in efforts to protect the Genetic Non-Discrimination Act, which makes it illegal to require anyone to undergo genetic testing or disclose the result.
Huge progress was made in 2018 with the National Dementia Conference and appointment of a Ministerial Advisory Board on Dementia. Both were requirements under the National Dementia Strategy for Alzheimer’s Disease and Other Dementias Act, adopted by Parliament. For Budget 2018, we lobbied the federal government to invest in dementia resulting in a $20 million commitment to Dementia Community Investment.
The Alzheimer Society has been advocating for a national dementia strategy for over 10 years. Such strategies are recommended by the World Health Organization and are in place in Canada for other conditions including cancer and mental health. With generous supporters like you, we achieved a major milestone last summer when the federal government launched A Dementia Strategy for Canada: Together We Aspire with an initial investment of $50 million over 5 years in Budget 2019.
The strategy has become a rallying point for the dementia community. It’s good to see that dementia is receiving so much attention in Ottawa. But we have much more work to do. The $50 million over 5 years announced in the most recent federal budget will not be enough to deliver on the strategy’s commitments. That’s why we must continue to make dementia a national priority. With you by our side, the Alzheimer Society will continue to push for a fully-funded national dementia strategy and for public policies that enable better access to high-quality care, reduce waiting lists, address stigma and embrace a sense of urgency.
And we need to invest more in research — into the causes and treatments of different forms of dementia, and to find ways to improve the quality of life. We will continue to work with our research partners to educate federal decision-makers about the need to invest in dementia research.
We’re making good progress, but to have an impact on the lives of people living with dementia and caregivers right now, we need to continue to work together to close the gap between current funding and the escalating need for research and support services.
Yes, there are many challenges ahead, but I remain hopeful that together, we can keep advocating for change.
