Community-led advance care planning programs for people living with dementia and family caregivers

Lead Organization

BC Centre for Palliative Care

Location

New Westminster, British Columbia

What is this project about and why is it important?

This project is supported by the Canadian Dementia Learning and Resource Network at the Schlegel-UW Research Institute for Aging (RIA) and funded by the Public Health Agency of Canada under the Dementia Community Investment (DCI). These funded projects are actively developing and testing tools, resources, and approaches to promote the well-being of persons living with dementia and care partners.

Advance care planning allows people living with dementia and their care partners to stay actively involved in decisions about their care throughout the dementia journey.

The project aims to mobilize and equip community-based organizations to promote awareness and support for person-centred care for people living with dementia and their care partners through engagement in advance care planning. Building on the success of an existing community-led Advanced Care Planning model, co-developed by the BC Centre for Palliative Care in 2016, the model involves partnering with community organizations and providing them with training, tools, and coaching to deliver Advance Care Planning programs and resources to the public.

Through the project, two complementary programs were developed to engage and support support older adults, people living with early stages of dementia, and their family and friends:

  1. A guided group conversation event to help participants explore their values, beliefs, and wishes for future health care and personal care. 
  2. A two-part information session to teach participants about the steps of advance care planning and offer information and resources to help them get started.

Who is this project for?

The target audience for this project is:

  • Community-based organizations supporting older adults, people living with dementia, and family/friend caregivers
  • Staff and volunteers from community-based organizations
  • The public: older adults at risk of dementia, people living with early stages of dementia, and their family and friends

Resources this project has created

Environmental Scan Report: Click here to read the executive summary.

 

Community Resources

  • Training Curriculum: BCCPC is committed to providing annual training sessions for new cohorts of organizations who are passionate about advance care planning and public education. Training sessions in 2022 will be announced through their monthly newsletter (CentrePoint) and mailing list – stay tuned!
  • Social Media & Marketing Toolkit is available to help you share these public-friendly resources in your community. It contains informational blurbs and graphics to support your own social media campaigns and newsletter releases

 

Public-Friendly Resources:

 

Presentations:

 

Publications:

3 Key Takeaways

  1. Frame Advance Care Planning as an integral part of life planning and around living well and quality of life rather than end-of-life. This helps in addressing stigma around death and dying. 
  2. To engage the public in Advance Care Planning, focus on conversations and storytelling rather than legal documents and medical orders.
  3. Involve end-users and people with lived experience in program and resource development to the greatest extent possible.

Project Details

Duration: 2020-2021

Organization Lead(s): BC Centre for Palliative Care

Project Team:

  • Eman Hassan, Project Director

  • Kathy Sheng, Project Manager, Curriculum Development Specialist, Knowledge Translation Specialist

  • Kathy Kennedy, Project Lead, Community Development Specialist, Master Trainer

  • Melody Jobse, Community Engagement

  • Michelle Ouimet, Project Coordinator

  • Neerjah Skantharajah, Project Coordinator

  • Vi Ho, Project Coordinator

  • Pam Martin, Evaluation Consultant

  • Chibuzo Ottih, Performance Measurement Specialist

  • Pam Warkentin, Communications Consultant

  • Nicole Chovil, Research Consultant

  • Leslie Ste. Marie, Writer/Editor

  • Michelle Shute, Writer/Editor

  • David Jung, Graphic Designer

  • Jane Rowlands, Graphic Designer

  • Irene Ou, Web Designer

  • Jennifer Bond, Administrative Assistant

  • Sarah Gray, Administrative Assistant

  • Esther Owoyomi, Administrative Assistant

Project Partner(s):

Project partners:

Task group of experts:

  • Carol Anderson, Public Partner, Instructor, UBC Health
  • Marissa Stalman, Dementia-Friendly Community Task Group Member, Maple Ridge Seniors Network
  • Myrna Norman, Public Partner, Executive Member, Dementia Advocacy Canada
  • Pat Porterfield, ACP facilitator, CEAN (Community Engagement Advisory Network), Vancouver Coastal Health
  • Stephen Holliday, Instructor, North Shore Elder College Society
  • Krista James, Legal Reviewer, BC Law Institute

Advisory committee:

  • Angela Brooks, Program and Operations Coordinator – Population Health, United Way of the Lower Mainland
  • Anthony Kupferschmidt, Executive Director, Langley Senior Resources Society
  • Avery Milne, Provincial Coordinator- Knowledge Mobilization, Alzheimer Society of B.C.
  • Barbara MacLean, Executive Director, Family Caregivers of BC
  • Carol Anderson, Public Partner, Instructor, UBC Health
  • Cathy Almost, Public Partner, BC Patient Safety & Quality Council
  • Gloria Gutman, Principal Investigator, iCAN-ACP, Simon Fraser University
  • Heather Cook, Seniors Services Advisor, Ministry of Health
  • Jackie Scott, Advance Care Planning Volunteer, Sunshine Coast Hospice Society
  • Julie Darney, Director – Education & Strategic Partnerships, Hospice Palliative Care Ontario
  • Krista James, National Director, Canadian Centre for Elder Law
  • Karine Diedrich, Director – ACP in Canada Initiative, Canadian Hospice Palliative Care Association
  • Marissa Stalman, Dementia-Friendly Community Task Group Member, Maple Ridge Seniors Network
  • Myrna Norman, Public Partner, Executive Member, Dementia Advocacy Canada
  • Pat Porterfield, ACP facilitator, CEAN (Community Engagement Advisory Network), Vancouver Coastal Health
  • Rachel Carter, Research Manager, Cultural Adaptations Project Manager, BCCPC
  • Stephen Holliday, Instructor, North Shore Elder College

For More Information

Project Website

This project is funded by the Public Health Agency of Canada under the Dementia Community Investment (DCI).

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