2016 Mindset Online Roundtable Discussions

BEYOND TOKENISM:

Working Together Toward Full Inclusion of People with Dementia

The 2016 Mindset Online Roundtable Discussions is a series of six on-line roundtable discussions that focuses on moving beyond tokenism to full inclusion of people with dementia. The Roundtable Discussions bring together people living with dementia symptoms, allied dementia support / care / health professionals, care partners and family members to advance our collective understanding and create a broader view, as equals. Everyone is the expert around the table. Discussions will be facilitated, and all participants around the virtual table are invited to join in equally.

Roundtable Session Topics and Dates:

Click on the session title below for a detailed description and the date of each session.

All sessions start at 1 pm ET, 12 noon CT, 11 am MT, 10 am PT, and 6 pm in the UK.

SESSION ONE How the Story of Dementia Impacts the Lives of People with Dementia (Wednesday, June 15, 2016)

Participants will examine the various stories that have been told about dementia, how those stories have varied in recent history and in those cultures known to participants.  We will discuss the barriers those stories create and/or remove and identify how such stories are influenced by factors such as the medicalized model of viewing dementia.  We will imagine whose stories are missing and discuss alternative stories from our different viewpoints.  Suggested reading: Dementia, Rights, and the Social Model of Disability

SESSION TWO Full Inclusion: What Does It Look Like? (Wednesday, July 13, 2016)

Many people with dementia advocate for “nothing about us, without us.” What does this mean to you? What would be the preferred state of affairs with regard to inclusion of people with dementia in matters of public policy, dementia education, dementia advocacy, and community life? How do we get there, while also avoiding tokenism? What are best practices for mixed organizations, small businesses, and practitioners who want the advice of and/or partnerships with people living with dementia?  Is there currently or would it be beneficial to create a registry of persons living with dementia who might be available to consult, advise, serve on committees, or speak at conferences? How do we foster respectful relationships between people of diverse abilities in our communities?

SESSION THREE Working In Coalition: How to Get Out of Our Own Way (Wednesday, August 17, 2016)

What does successful coalition work look like?  How is it measured and by whom?  We will identify our fox holes and silos and discuss what might be gained through coalition.  What does real partnership with people with dementia look like? How do organizations and individual people who support those with dementia do so in a manner that supports without taking over? We will examine the various projects in which people with dementia can be and are involved, including working groups of people with dementia, public policy formation, research for symptom management and drug trials. We will discuss how best to reduce barriers to participation, how to communicate genuine respect for one another’s contributions, how to recognize the value of varied approaches.

SESSION FOUR Finding Members of the Tribe: Successful Outreach and Networking (Wednesday, September 14, 2016)

With over 5 million people diagnosed with dementia in the USA and 750,000 in Canada, why is it so difficult to find people with dementia who want to be advocates? And on the flipside, why is it so difficult to for people with dementia to locate valued support services? We will discuss referrals, maintaining confidentiality, legalities, and review the current opportunities for people with dementia to be involved as advocates, to participate in support groups, and to access other programs and services. What are the benefits of being involved? What different forms can activism take? What are the obstacles and how do we remove them or improve access? Is there currently or would it be beneficial to create a registry of persons living with dementia who might be available to consult, advise, serve on committees or speak?

SESSION FIVE Succession Planning in Dementialand (Wednesday, October 19, 2016)

How do people with dementia continue to build and maintain a sustainable movement and a cohesive voice when our activists and leaders all have neuro-degenerative conditions? We will discuss capacity building, training, and mentoring of the next wave of advocates and leaders, along with different models of leadership or co-leadership.  We will talk about the value of appreciation, mentoring, delegation, natural ebbs and flows of personal involvement, and the importance of rituals for recognition and farewells within support groups and movements, and we will discuss the role of our allies and partners.

SESSION SIX Wrap-up: Where do we go from here? (Wednesday, November 16, 2016)

What were the hot topics, big ideas and take-aways that have emerged over the five sessions? Identify low hanging fruit and share action plans.  How have the Round-Table Discussions changed you and how you will proceed with your work / life? What subjects do you hope will be hosted by Mindset Centre in a future Round-Table Discussions series?

Keeping the Discussion Going Between Sessions

Sessions will not be recorded so that all participants can feel free to express their opinions and to participate in discussion using video. However, registered participants will be provided with a summary of the discussion and the major ideas to emerge from each session.  An online discussion forum will be set up for participants to continue the discussion between sessions and after, along with a Facebook page for public participation.

Where are the Roundtables held?

Online, using Zoom video conferencing. Participation will require a computer with a webcam, and either a microphone and speakers or a headset. iPads and other tablets and smartphones can also be used with Zoom.

Please join us if you:

  • Are a person with dementia interested in advocacy.
  • Facilitate a support group for people with dementia.
  • Need to know how to reach out to people with dementia.
  • Understand that inclusion of people with dementia is key to creating person-centered care.
  • Want to ensure meaningful participation of people with dementia in consultations.
  • Want to improve communication with people with dementia.
  • Need insight to the contributions people with dementia can make to your work.
  • Desire insight to building leadership, sustainability and leadership models for advocacy groups of people with dementia.
  • Want to understand how to best serve people with dementia and include them in your work.
  • Need to better understand how to support the well-being of your loved one with dementia.
  • Are concerned about including employees with dementia as contributing staff members.
  • Enjoy dialogue and debate with like-minded people!

Registration

Participation is limited to 50 people. Please plan on attending all six sessions.

Participants will be accepted by the organizing committee based on information on your registration form to ensure an interesting and dynamic mix of perspectives, experience and expertise.

Questions? Send us a message.

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