Coming Together to Support 2SLGBTQI People Living with Dementia and their Unpaid Primary Carers

Research-based and community informed education and resources designed to foster inclusivity and promote improved support for 2SLGBTQI people living with dementia and their care partners.

Who could benefit from reading this?

  • Healthcare and service providers who want to enhance their knowledge and capacity to provide safe and supportive care for 2SLGBTQI people living with dementia and their care partners.
  • Individuals and organizations who want to use the resources developed by this project to increase their ability to act in allyship towards 2SLGBTQI people living with dementia and their care partners.
  • 2SLGBTQI people living with dementia and their care partners who want to learn about available resources.

Review the Before you begin section for foundational knowledge that will be helpful for any dementia community initiative.

Key information

Who is this project for? 2SLGBTQI people living with dementia and their care partners, as well as those who support them (including healthcare and social service providers)

Project Lead: Egale Canada

Project partners: National Institute on Ageing (NIA) and Toronto Metropolitan University, with an advisory committee composed of representatives from the Alzheimer Society of Toronto, Rainbow Elders Calgary, ElderBerries, Nova Scotia Rainbow Action Project and the Queer Seniors of Saskatchewan

Project status: complete, 2019-2023

Get in touch:

Dennis Quesnel, Project Management Officer, Egale
Kendall Forde, Director of Project Management, Egale

Project story

Background:

Clear gaps in research and knowledge related to the unique experiences and needs of 2SLGBTQI people living with dementia (PLWD) and their care partners led to the development of this multi-phase project, the first national research study focused on 2SLGBTQI communities and dementia. Researchers used focus groups, interviews and expert consultations to identify common challenges, areas of opportunity, and learning needs required to build the capacity of unpaid care partners, healthcare and social service providers to provide inclusive and supportive care for 2SLGBTQI PLWD. Reports, eLearning modules and resources were created to meet this need, with unique offerings tailored to different roles. A nation-wide awareness campaign highlighted the specific needs and increased risks faced by 2SLGBTQI PLWD and championed the use of the education materials developed through this project to address this growing need.

Goals:

To enhance the provision of care, services, and support for 2SLGBTQI PLWD and their care partners in Canada by:

  • Identifying and addressing gaps in knowledge, understanding and critical inquiry
  • Developing education and resources to address identified gaps
  • Creating shared understanding of their lived experiences, perspectives, and needs
  • Promoting awareness of the unique needs identified and the resources available to address them

Impact

Project findings:

  • 100% of family/friend care partners who completed the eLearning modules reported improved wellbeing
  • 97.3% of participants reported increased knowledge and/or skills (Healthcare and Social Service Professionals and unpaid carers/family/friend care partners combined)
  • 93.3% of participants reported experiencing increased Improved protective factors (Healthcare and Social Service Professionals and unpaid carers/family/friend care partners combined)

Experiences:

  • “This has really opened my eyes to 2SLBGTQI need for support in healthcare when ageing. No matter what our place is in this world, we all have red blood.” – eLearning module user
  • “This is an excellent training, I oversee the training, learning & development program in my organization and have already incorporated into our training plan, and have assigned it to our Caregivers Education Team.” – eLearning module user
  • “I work with people who have dementia and identify in many different ways. I feel that this experience has taught me many of the ideas this training was designed to address.” – eLearning module user

Insights

Lessons learned:

  • When planning research involving 2SLGBTQI groups, direct engagement with community members is critical. This can include having community members be part of your research team, engaged in an advisory committee, and/or be involved directly as research participants. This approach helps ensure that research efforts are more culturally sensitive, relevant, and aligned with the real experiences and needs of the community.
  • The eLearning modules in this project were directly shaped by the perspectives, stories, and recommendations shared by 2SLGBTQI individuals living with dementia, their care partners and providers. This user-centric approach to creating educational materials is recommended, as it allows for users to be engaged throughout the development process, ensuring that the resulting materials are effective and tailored to the specific needs and preferences of the target audience.

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

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