Empowering Partnerships engages individuals with dementia and caregivers as co-researchers
Empowering Partnerships is designed to build a network of people living with dementia throughout Connecticut who are prepared to engage in the research process. In Oct 2019 we hosted the first of its kind 2-day training event with people living with dementia, researchers and care partners learning together on ways to promote partnership – not just participation. Over the 2 days we identified and prioritized research topics that support well-being, and learned ways to include people living with dementia as partners in all aspects of research – from study design, to implementation and dissemination.
The goal of this project is to empower persons living with dementia to align the direction of research with their priorities and issues of concern – “Nothing about us, without us!”. By training persons living with dementia, caregivers and researchers in ways to co-partner in research design and methods, new services to support living well with dementia can ultimately be created.
This project has strengthened and been executed in collaboration with the Dementia Peer Coalition – a growing peer coalition of people in the early stages of dementia – and grown their capacity to engage in patient-centered outcomes research and clinical effectiveness research by:
Growing an early-stage engagement network led by people with dementia
Offering a training program on co-research concepts, methods, participation
Creating and prioritizing a list of research topics for dissemination.
People living with dementia and care-partners have been and will be directly involved in the creation and execution of the project AND they receive the same stipend as other project partners.
” I need researchers to partner with me, evaluate what matters, and validate what is working. “– Bob Savage, Person Living with Dementia, Dementia Peer Coalition (DPC) Co-founder
“We can speak up and we will speak up. “– Geri Taylor, Person Living with Dementia
The Dementia Peer Coalition (DPC) is an independent group of people living well with dementia run by and for people with dementia. The DPC creates opportunities for peers living with dementia to support and empower one another in four areas: peer support, advocacy, community education & research. Groups meet regularly in the North Central and South Central regions of Connecticut.
Whether you are a person living with dementia, a family member or friend, a provider, or researcher, you can help us build and expand a strong DPC network to support this work. We welcome you to connect with us about the Dementia Peer Coalition or the Empowering Partnerships opportunity through phone, fax or email.