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Focus Group Participant, The Advance Care Planning for Dementia Project

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Open to Provincial Region, Patient partners across the province

Last updated

Advance Care Planning (ACP) is a way that helps you and those closest to you prepare to make health care decisions aligned with your wishes. It involves talking with others about your future health care wishes and deciding who can make health care decisions for you if you cannot do so. Adapting community-led education and supports for ACP to the unique needs of people with lived experience of dementia takes a gentle hand and heart. A team at the BC Centre for Palliative Care (BCCPC) wants to speak with those who have experience to share and are interested in helping guide the development of this model.

Open to: Patient partners across the province

Lead Organization or Department

The BC Centre for Palliative Care - Advance Care Planning for Dementia Project

Aim

The Advance Care Planning for Dementia Project aims to mobilize and equip community-based organizations to promote awareness and support for person-and family-centred care for people living with dementia and family/friend caregivers. The project will be adapting existing BCCPC’s community-led advance care planning interventions and toolkits for the context of dementia. The role of patient partners will be to share their feedback on the adapted materials produced.

Level of Engagement

This opportunity is at the level of consult on the spectrum of engagement. The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility

Open to patient partners across the province who:
  • Are living with early symptoms of dementia (may or may not be formally diagnosed) or a current family member/ friend/care giver of a person living with dementia.
  • Are comfortable speaking online via teleconference or over the phone.
  • Have access to an email address to receive preparation materials and updates.
If you have a strong interest in this work but have not yet completed a PVN orientation and Volunteer Agreement, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact Cassy Mitchell.

Logistics

  • Vacancies: 10
  • Date and Time: Two focus group sessions will take place in July/August to share feedback on the adapted materials that have been produced (from earlier patient partner interviews). Exact date and time will be dependent on the availability of patient partners and each focus group session will be no longer than one hour.
  • Location: Online via teleconference or over the phone
  • Commitment: One off

Reimbursement

No costs are anticipated: a toll free teleconference number will be provided to patient partners who do not have access to online teleconferencing.

Background

The Advance Care Planning for Dementia Project has provincial scope and is funded by the Public Health Agency of Canada. Other partners include Alzheimer Society of BC​, Family Caregivers of BC​, and United Way of the Lower Mainland. The goal of the project is to mobilize and equip community-based organizations to promote awareness and support for person- and family-centred care for people living with dementia and family/friend caregivers through engagement in advance care planning. The project will be collaborating with community-based organizations to develop, implement, evaluate and spread a package of advance care planning interventions tailored for the context of dementia. The project team has completed interviews with people living with dementia and their family/friends/caregivers and will be using the findings to guide curriculum development over the next three months. Due to the current situation with COVID-19, all consultations with patient partners during development of the package of advance care planning interventions will be conducted remotely via teleconferencing or phone. Participants are welcome to invite a family member, friend, or supportive partner to be present during the focus group sessions. Learn more about BCCPC.

Engagement Leader Contact Information

Cassy Mitchell
Engagement Leader, Patient and Public Engagement | Northern Interior
250.279.0717
cmitchell@bcpsqc.ca

From Our Community

Nancy J. Wood

Patient Partner, Sidney

Nancy J. Wood

I was thrilled to discover the Patient Voices Network, where the array of places to be the voice of a patient is vast and incredibly interesting. Besides my ongoing “gig” with the BC Emergency Medicine Network, I have enjoyed being involved in several one-off initiatives. I love working with professionals who genuinely value the perspectives of their patient partners.