Empowering Dementia-Friendly Communities Hamilton, Haldimand

Community initiatives that are co-designed and led by people living with dementia to develop, implement and evaluate programs and approaches that improve the quality of life for people living with dementia.

Who could benefit from reading this?

  • Municipalities, community organizations, service providers, and policy makers who want to use the lessons learned and recommended resources from this program to implement a dementia-friendly program in their local community.
  • People living with dementia and their care partners who want to learn more about dementia-friendly communities.

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? People living with dementia and their care partners and the communities of Hamilton and Haldimand County, Ontario

Project Lead: Hamilton Council on Aging

Project partners: people living with dementia, a multi-disciplinary team of organizations including the Alzheimer Society of Brant, Haldimand Norfolk, Hamilton Halton, the GERAS Centre for Aging Research, the Regional Geriatric Program (central), McMaster University, Haldimand-Norfolk Community Senior Support Services, Hamilton Health Sciences, and the Age-Friendly Hamilton Collaborative Governance Committee

Project status: complete, 2019-2023, with phase 2 underway (2023-2025)

Get in touch:

Tracy Gibbs, Hamilton Council on Aging

Project story

Background:

The Empowering Dementia-Friendly Communities project engaged with people living with dementia, their care partners and families in Hamilton and Haldimand County, Ontario, to learn about the experience of living with dementia in these communities, the challenges, and barriers encountered, and identify strategies to improve the social inclusion and quality of life of people living with dementia within their communities. Community consultations identified five key themes which were used to identify, fund, pilot and evaluate actions in the community over the course of the project. In both communities, people living with dementia led and supported the creation of a dementia-friendly education program and a public awareness campaign. Each community created Engagement & Empowerment groups, composed of and led by people living with dementia, who developed community events including an art festival, an ongoing newsletter and a public mural unveiling.

Goals:

The Empowering Dementia-Friendly Communities Hamilton, Haldimand project aimed to improve the social inclusion and quality of life of people living with dementia through:

  • Empowering people living with dementia to be active members, leaders and change makers in their communities
  • Challenging stigma surrounding dementia and promoting compassion and support
  • Fostering social inclusion and participation of people living with dementia
  • Building understanding and awareness of dementia and modifiable risk factors for dementia

Milestones and achievements:

 

Impact

Project findings:

  • 16 million viewers were reached by the Faces of Dementia awareness campaign
  • 357 community members were educated through the Dementia Friendly Community education program

People living with dementia who participated as Lived Experience Leadership team members:

  • 83% experienced a high level of empowerment as a result of their involvement
  • 83% experienced an improved sense of well-being and belonging within their community

Care partners and service providers who participated in Dementia Friendly Community education:

  • 77% increased their knowledge of how to make their community more dementia friendly
  • 73% improved their ability to reduce stigma through social and environmental factors
  • 75% reported increased understanding of social isolation and strategies to minimize its impact

Community members who participated in dementia-friendly education and events:

  • 75% increased knowledge and understanding of dementia and its impact
  • 88% reported increased understanding of the stigma experienced by people living with dementia

Experiences:

  • “It is the first time since my diagnosis I have felt inclusion and self worth. Memory+ diagnosis can be difficult to understand if you don’t have any connections to these disease progressions. People can become invisible, a person to hide. Other diseases may get ‘championed’, they are warriors. So are we, and this is an awesome opportunity for a voice. It is the first time in years I was welcomed and involved in a project. I love the experience.” – Lived Experience Leadership team member
  • “Incredible messages of hope and purpose. Thanks to all of you for sharing your stories and faces with us!! People living with dementia are LIVING, and this is what your video reminds the world about!” – Faces of Dementia campaign launch attendee
  • “I had conversations with family members about increasing the autonomy of their loved ones. They tend to want to direct all things and I can see now how deflating can this be.
    I try to model this by giving the patient more choice and include them in decisions. And taking the advice I learned in the workshop – where appropriate, I don’t talk to the caregiver or spouse – I direct my questions to the person with dementia. You learn so much doing this! I’ve talked to my coworkers about this”. – Education program participant

Insights

Lessons learned:

  • The authentic involvement and partnership with people living with dementia is crucial for any dementia-friendly community initiative. Co-designing and leading project activities fosters meaningful engagement and supports the alignment of priorities and the relevance and impact of chosen project activities.
  • ‘Backbone’ organizations (such as an Alzheimer Society or established community organization) are a crucial resource for supporting a group of diverse stakeholders and provide needed governance and structure (resources, funding, dedicated staff) to enable persons with dementia to actively guide community-based action plans.
  • Partnering with individuals and organizations who share a common vision and commitment to building dementia-inclusive communities can facilitate collaboration. Diverse partners can bring unique skills and perspectives which can be used to support the project’s success.
  • Support for dementia-friendly community recommendations may be strengthened in communities where there is an existing Age-Friendly Plan, which can provide resources, momentum, and promotion for project activities.

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

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