The LiveWell Institute is a hub of research, education, thought leadership, and advocacy with a core focus on identifying, developing, implementing, and disseminating innovative approaches and practices for living well with dementia. The Institute seeks to deepen the integration of research, policy, and practice and address individual, organizational, and community needs to advance well-being and resilience. Through continuous development of learning and leading stakeholders, the Institute translates research and knowledge into practice, while also impacting policy and systems change. With diversity, equity, inclusion, and belonging as its cornerstones, the LiveWell Institute and its partners are committed to advancing social change and creating communities where the worth and contributions of people living with dementia and the value of their social connections are upheld and encouraged.

Central in all aspects of Institute’s work is the Empowering Partnerships Network, a diverse, peer network of individuals living with dementia and multi-stakeholders that are engaged to transform care, services, and experiences with and for people impacted by dementia. Collaborative activities include the following:

Research
 Co-partnership workshop(s) of People Living with Dementia (PLWD) and Care Partner (CP) with Researchers
 Study Design, Award Selection, Implementation, Evaluation, Dissemination

Policy
 Advocacy
 Awareness
 Policy and Social Change

Practice
 Program Design/Development and Implementation
 Workforce Development (informal/formal)

Empowering Partnerships began with a unique 2-day training workshop for persons living with early experiences of dementia, caregivers and researchers on ways to co-partner on research priorities, study design and methods. The training includes powerful co-learning opportunities on issues of capacity, consent and ways to leverage the strengths and retained abilities of people living with memory and cognitive changes from dementia.

Most research today for Alzheimer’s and Dementia is around the cure. While this is important, people living with dementia desire ways to live well today. People living with dementia need researchers like you to know what is important to their lives and to have a say in WHAT is studied, HOW it is planned and implemented.

Benefits of Co-Research Include:

– Engaging persons living with dementia will assist researchers with real-world questions of how to live well with, as opposed to be cured from, dementia
– Researchers leverage the lived expertise of individuals living with cognitive change
– Individuals living with cognitive change impact priorities of researchers, based upon their life experiences
 – Potential to enhance quality and appropriateness of interventions for persons living with dementia and care partners
– Provision of a mechanism through which persons living with dementia can give back and help others
– Reduction of stigma about abilities of persons living with dementia to contribute to society
– Come and helps us build a ground-breaking approach to research by participating in the Empowering Partnerships opportunity. You can spark change in aging services and supports today!

“As researchers, we think that because we read the scientific literature that we know what benefits are most important to people living with dementia. There may be other outcomes that we didn’t even consider that people living with dementia could tell us about. The same goes for care partners”,said Dr. Richard Fortinsky, Ph.D. Professor, UConn Center on Aging.

LiveWell Alliance has received a $249,545 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient- Centered Outcomes Research Institute (PCORI). These awards are designed to encourage the active integration of patients, care partners , clinicians, and other healthcare stakeholders as integral members of the research process including: topic selection, study design, conduction of research, and dissemination of results.

The Empowering Partnerships project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

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?

1. Persons living with dementia wanting to make a difference in how supports and services are offered.
2. Personal and professional care partners are
3. 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.

Why is Peer Support Important?

In a traditional support group, the ‘professionals’ does most of the talking and give advice. Peer suppor enables members to be able to address their own issues. A professional staff person is present, and acts as an administrative support to the group.

How can I get involved?

As a person living with dementia, a family member, friend, provider or researcher, you can help us build a strong network. We welcome you to connect with us for more information through phone, fax or email.

Phone: 860-628-9000
Fax: 860-621-8083
referrals@livewell.org

The staff of the LiveWell Institute and nominated member(s) of ‘Empowering Partnerships’ co-lead an Advisory Board of people living with dementia and other relevant stakeholders. The Advisory Board advances and evaluates initiatives on a quarterly basis. Through consensus, an annual “resilience agenda” is developed that outline key priority areas. With each priority the intersection of research, policy, and practice is evaluated and aligned with private/public funding opportunities. To further inform priorities the Institute may conduct focus groups, key informant interviews, literature brief, and scan of national/state priorities/initiatives and evidenced-based programs.

The “resilience agenda” will subsequently impact:
o National platform for fostering healthy communities and the associated opportunities
o Cross-sector coalition building, and grassroots community mobilizing efforts focused on shared vision, resource/asset building, data sharing, and mutually re-enforcing activities
o Formal partnerships with universities, healthcare, government, and community-based organization, faith-based organization, state/national associations
o Research, grant-making, creative financing opportunities
o Policy implications on a local/state/national level
o Breakthrough innovation and exemplar practices
o Education/consultation/coaching programs for use on an individual, organizational, and community level.

Programs/Services may include:
 Workshops/Retreats/Learning Journeys
 Certificate programs
 Coaching Opportunities
 Tool-kit Guides
 Pod Casts/Webinars
 Appreciative Inquiry Summits

The LiveWell Institute and members of the ‘Empowering Partnerships’ members will leverage and advance the work initiated with the PCORI Eugene Washington Engagement Award. This inaugural initiative serves as a platform towards building the readiness, infrastructure, and capacities to addressing ‘resilient living’ agenda developed through the ‘Empowering Partnerships’ workshop.

The ‘resilient living’ agenda established includes five focus areas:
o Stigma
o Independence
o Relationship
o Social Activity
o Diagnosis