The CCEL Dementia + Decision-Making Project is an initiative to support the rights of people living with dementia in making decisions about their care and well-being so that the rights of people living with dementia are respected, and they participate as much as possible in the decisions that matter to them.

It builds on previous CCEL projects, which revealed that there is a need to better engage people living with dementia in decisions relating to their care and well-being.

This project is intended to support people living with dementia, as well as family or friend caregivers and care partners, and health care providers.

Based on the information gathered from all of these perspectives, we developed tools – videos, practical guides, information brochures and decision-making pathways – to share practical and legal information to provide insight on supporting and empowering people living with dementia.

Over the course of this project, we partnered with and learned from people living with dementia, family caregivers and care partners, and health care professionals. This included focus groups, advisory committees, consultations, and a highly attended Dementia Rights Gathering to engaging with people living with dementia, or those who live with, support, or work with people living with dementia. You can access our PowerPoint presentation that summarized themes of participant feedback here.

The full collection of tools are available below.

Tools and Resources

These tools are intended to support people living with dementia, as well as family or friend caregivers and care partners, and health care providers. The tools were developed based on the information gathered from all these perspectives to ensure that these materials can best serve these audiences. While the tools are all interconnected, and we encourage you to review them all, you may also wish to focus on a particular issue or tool.

Practical Guides

A Guide for Caregivers and Care Partners on Engaging People Living with Dementia in Decision-Making

A Guide for Health Care Providers on Engaging People Living with Dementia in Decision-Making

Brochures

Things to Know About the Law and Decision-Making

Ways to Support a Person Living with Dementia in Decision-Making

Words You May Hear from a Health Care or Legal Professional

Videos

Insights of Myrna, a person living with dementia

Myrna provides direct experiences as a person living with dementia and gives insight into the journey she is on, including some strategies she has found to help her with decision-making.

Insights of Shirley, a caregiver

Shirley provides insight into how she and her siblings discussed difficult topics with their mom and learned about their mom’s preferences through these conversations.

Insights of Rai, a clinical nurse educator

Rai provides insight into how health care providers can engage certain strategies in a busy care environment to better support people living with dementia to participate in decision-making

Insights of Simon, a geriatric psychiatrist

Dr. Woo provides insight into how he engages patients in the care setting and strategies he uses to give a voice to patients when discussing their care regardless of their diagnosis.

Insights of Carolyn, a caregiver

Carolyn provides insight on communicating with her mom and supporting her and other family members navigate decisions surrounding personal and health care.

Pathways

Supported Decision-Making Strategies

Health Care Decision-Making Tool

Personal Care Decision-Making Tool

Admission to Care Facility Application Tool

Substitute Decision-Making Tool for the Health…

If you or your organization would like an educational session or webinar on these resources and their intended use, please contact us at [email protected].

Support

The Dementia + Decision-Making Project would not have been possible without the guidance from:

  • Dementia Advisory Council – Jerry Gosling, Mario Gregorio, Lynn Jackson, Myrna Norman Craig Burns (2020-2023) and JP Daem (2020-2023).
  • CCEL also thanks Jess Fehrenbacher for leading this project in 2021 and 2022.

We are grateful for the financial support of the Vancouver Foundation and the Law Foundation of British Columbia which enabled this project.

Our Project Partners