Dementia? Let Us Help You Understand.

Imagine going to the airport. You have both a feeling of excitement about reaching your destination, and nerves for the anticipated flight ahead. You greet the airline attendant as you check in for your flight and the person at the counter explains your times, gates, and hands you your boarding pass. All of a sudden they read your identification information and ask, “who is the person who needs assistance?” When you explain that it is you because you live with dementia, their demeanor immediately changes and they stop making eye contact. They now only speak to the friend that is accompanying you. The attendant now assumes you are incompetent and you are no longer treated as a person. This is the stigma Marilyn Taylor and many other Nova Scotians diagnosed with dementia face every day.

January has been Alzheimer’s Awareness Month and our campaign has been about changing attitudes towards the disease and reducing the stigma that surrounds dementia. We have launched an awareness campaign, “Yes. I live with dementia. Let me help you understand,”showcasing the unique and diverse stories of individuals like Marilyn Taylor living with Alzheimer’s disease or another form of dementia. While there is no question that dementia is a complex disease, it is just one aspect of a person’s life story. Nova Scotians with dementia deserve respect, a good quality of life, and to face less stigma as they go on living their lives. 

Research shows that stigma around dementia is rampant. In a survey commissioned by the Alzheimer Society last year, 1 in 4 Canadians said they would feel ashamed or embarrassed if they had dementia, while 1 in 5 admitted to using derogatory or stigmatizing language about dementia. 

Misconceptions and stereotypes are often the root of stigma. It contributes isolation those living with the disease incur, and discourages their families from confiding in others or getting the support they need. It is important for people to realize that negative reactions from family, friends, and professionals can impact a person’s well-being and ability to manage the changes brought about by the disease. 

People living with dementia are entitled to the same human rights as everyone else, but stigma can create barriers and often contravenes these rights. Recently, this led to the creation of the first-ever Canadian Charter of Rights for People with Dementia. The charter is the culmination of work from the Society’s Advisory Group of people living with dementia from across the country including Nova Scotia’s Marilyn Taylor. Its purpose is to make sure people with dementia know their rights, empowers people with dementia to ensure their rights are protected and respected, and makes sure that Canadians know these rights and support people with dementia.

This year take the time to become better informed about a disease that has the potential to impact every single one of us. By working together we can build an inclusive community.

The next time you meet someone with dementia, I want you to clear your mind of any preconceived conceptions you have about the disease. If you've met one person with dementia, then you've only met one person with dementia. When they tell you they have the disease, ask them, in their words, to help you understand.

-Lloyd Brown, Executive Director, Alzheimer Society of Nova Scotia