Scroll Down Scroll Up
HOME / Being open about dementia

Being open about dementia

A diagnosis can be traumatic, but the journey can still hold a lot of beauty. Learning to be open about a dementia diagnosis with those around you may help. Read Catherine's story about her and her mother's experience here.

When Catherine Ann Kelly’s mom was diagnosed with dementia in 2009, a couple months after having a stroke, the news was devastating. At the time Catherine’s level of knowledge of dementia was based on her aunt’s experience 10 years prior, “All I had was antiquated ideas, 90’s healthcare response to it.” She wished she had had at the time, the insight she gained in the year that followed her mom’s diagnosis.  

The Kelly’s are a family that are guided by intention and value-based decision making and their actions are informed by the intention in which they enter a space. So, they set an intention in their mom’s diagnosis. Their intentions were this:

 “You will be loved and safe. You will be taken care of at home as long as it’s possible to care for you in the way that is needed. And, we will never lie to you.”

These were the principles of how Catherine and her family entered into the new piece of their lives. For Catherine’s mom, her mantra became, one day at a time, and she set the tone for how her journey would unfold. Although there was tension, the Kelly family infused humour into their lives, they were realistic in understanding the future of living with dementia, and as a result, would have very open and honest conversations. Nothing was off the table, not even how her mom felt about death.  

Although the diagnosis was traumatic, the journey held a lot of beauty. Catherine felt her mom and family were very fortunate to have been able to access wrap-around services led by professionals who practiced person-centred care. When asked what advice she would give to someone who just received a diagnosis, this is what Catherine said, 

“Make your own plan. Make your own path. You have the power and ability to do that. You are the director of your own journey.”

“People say that you shouldn’t travel, and you should have the same environment. But, maybe, maybe not. Mom flourished in being with my brother and his two small children and being with me and my partner. I work in community services, so there would be a lot of community events. So, she would come to all the community events with me. So, she had two different lives in different spaces and they each fed her in different ways. So, I would say to anyone that is fearing a diagnosis to take what you want from all the expert advice out there and from other people’s lived experiences and make it your own. You have the power and ability to do that. You are the director of your own journey.”  

Catherine acknowledges that it is not going to work the same for every family; family culture has a great deal to do with how a diagnosis is managed. For the Kelly’s, they were very open about the diagnosis. 

“Whenever mom met someone new, she would introduce herself and tell them she had a stroke and ‘got the dementia’. In doing so, she took her power back.” 

Some people can feel shame in the diagnosis and Catherine knows many people that have not been as open as her mom.

“There’s no right way; there’s just your way. When you are open and you are liberated, you invite people into your journey, and those are the people you want around.”

There’s going to be a lot of people that’ll disappoint you. There’s going to be a lot of people that cannot be in your space because they are grieving who you were. And that’s their journey.

You cannot force them to be a different way. And you just need to reconcile with that.

the future
Come to terms with dementia
Sharing the diagnosis helps others to understand and helps you and the person with dementia, get the support you need.
Read “Telling friends and family” to learn strategies for how to share the diagnosis.