TORONTO -- When Margaret MacMillan was diagnosed with dementia more than five years ago, she felt like the whole world was watching.
Today, with her daughter, CTV News Channel anchor Marcia MacMillan, by her side she admits she is among one in four Canadians living with dementia who still feels embarrassed or ashamed of the diagnosis.
鈥淚n the early days (of the illness) my mom would say to me a lot that she wished she could help people, and I haven鈥檛 forgotten that,鈥� MacMillian said, smiling at her mother.
鈥淲hen I talk to people who are going through similar experiences, there鈥檚 an automatic kinship and I feel like if more people could understand what this is about we would all be better off.鈥�
More than half a million Canadians are living with dementia -- a figure that is expected to double by 2031, according to the Alzheimer鈥檚 Society of Canada. Despite these numbers, the organization says social stigma facing dementia patients and their families remains high.
鈥淧eople don鈥檛 understand what it really is鈥攖hey think it鈥檚 just forgetfulness and there鈥檚 so much more to it,鈥� explained MacMillan.
MacMillan says her mother was a smart, stylish, funny, entrepreneur. And that鈥檚 still in her despite the disease.
鈥淚 feel like people don鈥檛 recognize that there is still a person inside -- a person that feels things, and wants to participate in life, be part of life and see the world.鈥�
(Photo from Marcia MacMillan's family archives)
Shifting from daughter to caregiver is a bittersweet change in MacMillan鈥檚 relationship with her mother, one she says has always been close.
Once an independent business owner, Margaret now lives in a retirement home and relies on MacMillan in new ways, including the occasional reminder of who is the mother in their relationship.
鈥淚 feel fiercely protective. I feel a different sort of love鈥� a deeper love,鈥� MacMillian said.
Dementia, MacMillan said, is 鈥渢errible, cruel and unfair,鈥� but she noted there is still so much joy in her relationship with her mother -- something no diagnosis could change.
鈥淲hile a lot of things are lost, the ability to do basic things and remember people, there are also some wonderful things that can happen if you鈥檙e open to it,鈥� she said.
鈥淭here can still be something that you each get out of it 鈥� it doesn鈥檛 mean the end.鈥�
MacMillan鈥檚 message of hope and awareness is shared by other Canadians living with or caring for someone with dementia -- a message the Alzheimer鈥檚 Society of Canada says is crucial for the next wave of people diagnosed with the disease.
鈥淭oday, people have a preconceived notion that a person with dementia is someone who is crippled, sitting in a wheelchair, or is bedridden,鈥� Nalini Sen, an Alzheimer鈥檚 Society of Canada spokesperson, told CTV News.
鈥淚f people have a negative perception of dementia then it will prevent others who are newly diagnosed from going about and seeking the support and help that they really need.鈥�
On Monday, the organization launched its annual dementia awareness campaign, 鈥淚 live with dementia. Let me help you understand,鈥� as part of Alzheimer鈥檚 awareness month. Now in its third year, the campaign aims to raise awareness about the many faces of dementia.
鈥淭here is a preconceived notion that once they鈥檙e diagnosed with dementia that there is a rapid degeneration in their ability, but that鈥檚 not necessarily the case,鈥� said Sen.
鈥淧eople are still able to go about living a proper lifestyle and able engage in daily activities as they have done before.鈥�
(Photo from Marcia MacMillan's family archives)
The campaign also provides the public with tools to support those living with dementia, including insights into some of the common behaviours, such as frustration and confusion, and how to communicate effectively.
MacMillan hopes that in sharing her mother鈥檚 story, she can inspire others to be open about their journey.
鈥淚 just feel that my mom is so special; that everyone should know her and hopefully learn something about her journey with dementia,鈥� she said.
鈥淓ven though it feels unique to us, there is probably a lot of people who could relate to what we鈥檝e gone through these past few years.鈥�
