Skip to main content

Because your voice matters.

From Diagnosis to Action – the Dementia Companion Handbook 

Posted

Categories: A New Approach, Improving Health Care, Working Together for Better Health Care

In 2008, patient partner Mario Gregario received a life-altering diagnosis of dementia. “Sometimes when people receive a life-changing diagnosis, they become depressed. I looked at it as how can I improve myself and the next generation.”  

Determined to help others improve their experience after diagnosis, Mario focused his efforts. “After my diagnosis, there was no hope or cure, that’s how they phrased it. I don’t want my care providers to sugarcoat it, but you can phrase it in a way that gives us hope in how to live our lives into the future.” 

Mario’s living experience led to his work with Providence Health Care’s Shared Care Team* to develop a Dementia Companion Handbook. The handbook’s goal is to improve communication between health care teams and patients.  

“We had everyone involved – patients, doctors and care teams,” said Margot Wilson, Providence Health Care.   

The team’s focus was to help patients identify the different members of their health care team and the information they need. This includes care planning and documenting conversations with different healthcare providers. They can also record questions for future meetings and link to relevant resources for information and support.  

“We learned a lot during this project,” said Miranda Defer, Providence Health Care. “Navigating the desires of all involved can be tricky. We found common ground for the work by breaking the development into topic-focused working groups. The team focused on how to best support consensus-building for the final draft.”  

For Mario, the handbook is a start.  

“This is a good start, the team listened to our feedback. I am hopeful that we can learn and make it even better in the future.” Mario shared some wisdom about his journey, and what’s important for the future of dementia care. “How providers communicate, the language that they use is so important,” he said. “They go from their medical training but not always from the feelings of the patient – this strikes us really bad – the language is not offensive, but it really hurts.” He believes that learning from his experience can help them be better health care providers in the future.  

A copy of the handbook lives online, in partnership with the Alzheimer’s Society of BC.  

“Our goal was to improve coordination of care providers for patients – to decrease the chaos of complex care,” said Margot. While there may be a long way to go, she added, projects like this help to improve the care experience for both providers and patients.  

For Mario, his coaching-mentoring with the University of British Columbia gives him hope. 

 “Giving students an inside look from someone living with dementia – and the stigma in a multi-ethnic community – can hopefully improve the journey for the younger generation.”  

Find out more about the dementia handbook at the Alzheimer’s Society of BC. 

* The Dementia Companion Handbook is an initiative of Providence Health Care supported with funding from the Shared Care Committee, one of four Joint Collaborative Committees representing a partnership between Doctors of BC and the Government of BC.  

From Our Community

Layton Engwer

Patient Partner, Sooke

Layton Engwer

PVN helped empower me to make meaningful contributions to Primary Care (PC) locally and provincially.  It also facilitated creation of PC Patient Voices which is focused on PC and provides education support and building on shared experiences.