What is the Empowering Partnerships Opportunity?
Empowering Partnerships is designed to build a coalition of persons living with dementia who are equipped to engage in the research process. The project, funded by the Patient-Centered Outcomes Research Institute (PCORI), includes a training program on research concepts and ways to co-partner on study design and methods including specialized education on how to leverage the strengths and retained abilities of people living with memory and cognitive changes from dementia.
Why is Getting Involved in Research Important?
Historically, research agendas have been largely determined by scientists. 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, care-givers and researchers in ways to co-partner in research design and methods, new services to sup-port living well with dementia can ultimately be created.
What is the Commitment?
Participants with be asked to attend a Welcome/Orientation session, and a 2-Day Empowering Partnerships training. You will be asked to provide feedback before and after the training through surveys.
Is there a Cost to Participate?
There is no cost for participation; meals during the 2-Day Training are included, and transportation will be provided to the training if needed.
Who can get Involved?
- Persons living with dementia wanting to make a difference in how supports and services are offered.
- Personal and professional care partners
We are also looking for innovative researchers interested in partnering with persons with the lived experience to radically change research design and implementation. This is the right opportunity for you if:
- You are interested in learning how research can directly impact human dignity and health equity.
- You are curious to explore new methods of research design.
- You want to be connected to a larger network for willing and like-minded participants, partners, and researchers.
- You are open to engaging with ILWD to conduct more impactful research and garnering more sustainable strategies for LWD.
- Increase opportunities to secure cutting-edge research grant funds in this burgeoning field.
What is the Dementia Peer Coalition?
The Dementia Peer Coalition (DPC) Coalition is an independent voice of people living well with dementia run by and for people living well 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, and volunteerism.
Where does the DPC Meet?
Groups meet regularly in the North Central and South Central regions of Connecticut. Meetings are also available through video teleconferencing from your home (ZOOM teleconferencing technology).
Why is Peer Support Important?
In a traditional support group, the ‘professionals’ does most of the talking and give advice. At the DPC, people living with dementia lead the meetings and give each other advice. This empowers DPC members to be able to address their own issues. A professional staff person is present, and acts as an administrative support to the group.
What does the DPC do?
Members of the DPC have been involved in many opportunities, including advocacy to our Federal and State legislators, education to the public through participation in To Whom I May Concern® and co-leading Dementia Friends training sessions, as well as co-presenting at local and national conferences like LeadingAge and Alzheimer’s Disease International. However, we also love to simply hang out and enjoy each other’s company.
CALL TO ACTION
As a person living with dementia, a family member, friend, provider or researcher, you can help us build a strong DPC network and support the Empowering Partnerships project. We welcome you to connect with us for more information through phone, fax or email.