Alzheimer's blog

Meeting of the Minds gathers dementia community

By Angela Lunde February 20, 2016

Scientific conferences are wonderful. Brilliant minds and sophisticated thinkers from around the world convene to try to solve a complex disease or medical issue and share novel ideas, new research and emerging treatments.

To some degree, the actual person (patient) behind all the science may appear to be reduced to an image on a scan, a misfolded protein or a data point in a research finding. But what if patients were actually permitted to attend scientific conferences?

One of the best examples of this (OK, maybe I'm biased) was the International Dementia with Lewy Bodies Conference that took place last December in Fort Lauderdale, FL.

This conference hosted by Mayo Clinic and the Lewy Body Dementia Association included neuroscientists from around the world, as well as persons living with the disease.

Those with the disease and their care partners had the opportunity to attend scientific presentations and specially designed "decoding" sessions to help make sense of it all.

Patients and care partners browsed through research posters with an informed guide to help decipher key findings. Some of the best discussions I witnessed between a scientist and someone living with the disease occurred informally, over coffee or a glass of wine.

It may not be right for all scientific conferences to include patients, but with the right planning they can, and should, occur more often. People affected by dementia are the experts on what it's like to live with the disease. Their expertise can inform the science, research and policies aimed at improving diagnosis, treatment and quality of life.

And, as we take action to eradicate the dementia stigma that persists in our cities, communities and even our healthcare systems, conferences like this one are on the right track. It's about seeing the person and not just the disease.

Another conference that I'm so proud to be involved with is coming up soon: Meeting of the Minds next month in St. Paul, Minn. The annual dementia conference is intended for people living with the disease, care partners, healthcare and service providers and those interested in making a difference in our communities.

The incredibly rich and diverse lineup of speakers and topics include sessions on Frontotemporal Dementia, Dementia with Lewy Bodies, Progressive Supranuclear Palsy, Corticobasal Degeneration, as well as Alzheimer's.

Keynote speakers include Dr. Donald Warne, senior policy advisor to the Great Plains Tribal Chairmen's Health Board, and Dr. Mary Mittelman, recipient of the Alzheimer’s Association Zenith Fellows Award for her research on the effectiveness of counseling for couples impacted by dementia.

Other topics include Alzheimer's in the African American and Hispanic/Latino Communities, and understanding and meeting the needs of the dementia community within the Lesbian, Gay, Bisexual and Transgender Community.

I'm also excited to have Evan Bass, actor and writer, and Miranda Noelle Wilson, actress and playwright, who will demonstrate the use of improvisation as a therapeutic treatment for those with dementia. Their work is currently part of a non-drug clinical trial for Alzheimer's and dementia.

While scientific conferences focus on ways to cure, prevent or delay symptoms of dementia, equal focus and resources need to support ways to improve the quality of life of those impacted today.  This is what conferences like Meeting of the Minds do so well.

We encourage and welcome persons living with mild cognitive impairment or early dementia and their care partners to attend Meeting of the Minds on March 19th. We want you to feel the support, compassion, and hope that defines this day year after year.

Conference details:

Saturday, March 19, 2016
7:30 a.m.-4:30 p.m.
Saint Paul RiverCentre
St. Paul, MN., 55102

To Register:

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Feb. 20, 2016