June is Alzheimer's and Brain Awareness Month

University faculty shines a light on contributions of people living with dementia

A collage of photos and infographics of Dementia Conversations

To mark Alzheimer's and Brain Awareness Month, Jennifer Carson, Ph.D., director, dementia engagement, education and research program, School of Community Health Sciences, detailed one of Dementia Friendly Nevada's trailblazing efforts, Dementia Conversations. The program exemplifies some of the radical change which Carson says is needed. 

Jennifer Carson, Ph.D., Dementia Engagement, Education and Research (DEER) Program director, School of Community Health Sciences, envisions a world in which people living with Alzheimer's disease and other dementias can live well and thrive.

"A diagnosis of dementia is so stigmatized and so misunderstood, that people living with dementia and their families often withdraw from their social lives, exacerbating isolation and diminishing well-being," said Carson.

Carson's work at the University of Nevada, Reno focuses on discovering new ways to support and empower people living with Alzheimer's and other dementias - that's 50 million people worldwide and almost 50,000 in Nevada, according to the Alzheimer's Association. Over decades, she has worked in the field of dementia care and support as a healthcare professional, educator and researcher. In 2016, she became a family care partner herself.

Today, as the director of the Dementia Engagement, Education and Research Program at the University of Nevada, Reno School of Community Health Sciences, Carson leads a portfolio of programs and initiatives aimed at making it possible for people to live well with dementia. One of her roles is supporting community-driven efforts to transform the culture of dementia, as director of Dementia Friendly Nevada.

To mark Alzheimer's and Brain Awareness Month, Carson detailed one of Dementia Friendly Nevada's  trailblazing efforts, Dementia Conversations. The program exemplifies some of the radical change that Carson says is needed. 

"Dialogue Education"

"The Dementia Conversations program is by far my favorite thing to do every single week," said Carson. 

It began in March 2020 as a way to explore practical ideas about how people can approach life while living with one of the many conditions that fall under the term "dementia." That includes Alzheimer's disease, vascular dementia, Lewy Body dementia and more.

It's not a support group, although participants explore supportive ideas. It's not a lecture or workshop, although researchers and educators are part of the group. 

Carson calls the model "dialogue education," meaning people co-create knowledge through sharing their lived experiences, generating collective wisdom. As a side benefit, the sessions create communities of support. Participants share their experiences, which educates everyone in the discussion. The end result is learning for all present: family care partners, professionals and the people living with dementia themselves. The process demonstrates how much people living with dementia can contribute to their own lives and the lives of others when their authentic engagement is supported.

"It's so easy to fall into the trap of thinking there is just one approach or solution," said Carson. "But dementia is a complex experience. Dementia Conversations opens a space for a variety of different, helpful approaches and ideas to be explored. 

That reciprocity drives the program's impact and success. 

"People leave feeling heard and supported. It's not just what you receive from others, but what you're able to contribute," said Carson. "One of the hardest things to do when you're living with dementia is to feel valued."

This Zoom-based program grew in popularity during the pandemic, expanding to its current twice-a-week, 90-minute format. Carson says Dementia Friendly Nevada may soon offer it three times a week due to demand from professionals, educators, care partners and - most importantly - people who are living with dementia, who are the program's most valued contributors.

How the program works

Each Dementia Conversation session is co-hosted by a family care partner and a person who is living with dementia. There are about a dozen other participants each time, including professionals, care partners and people living with dementia.

Currently, the co-hosts are Carson, who shares her perspectives as a professional and family care partner, and Chuck McClatchey (host of the "This Dementia Life" podcast) for Monday sessions, and Nancy Nelson (a national dementia self-advocate) and Kat Hartley (also a professional and family care partner) for Friday sessions. They gather on Zoom with other participants to talk openly and honestly about what it means to live with dementia and to explore ideas for living well.

Session topics - almost always put forth by participants - are often practical (e.g., driving or getting an accurate diagnosis), proactive (e.g., how to support one's well-being) or social (e.g., how to overcome the stigma associated with dementia, or the role of humor). "

Nobody's giving advice; that's one of our guidelines," Carson said. Instead, each participant - including the co-hosts - simply shares from their own experience. Then, each person decides what they will take away from the session.

"The takeaways are more powerful than any kind of static curriculum I could have created," Carson said. "When you're co-creating knowledge, you don't really know what the product is going to be until you've created it together."

About those misconceptions

Over two recent Dementia Conversations sessions, educator, blogger and activist Kyrie Carpenter joined the groups to seek their help in developing a list of fallacies and clarifications about dementia to publish online.

"Who better to dispel the myths than the experts of lived experience?" Carson asks. Over two sessions, the groups identified more than two dozen false beliefs and unfounded fears, including:

* A pill can fix it. Carson said medications can play a helpful role, but the importance of focusing on social engagement, support and well-being is of paramount importance in living well with dementia.

* There is no hope. "That's absolutely incorrect," Carson said. "Yes, Alzheimer's is progressive, and yes, it is ultimately fatal, but I know people who are living with dementia like they live with other chronic conditions for upwards of 10, 15 and some, even 20 years, many of whom are living well."

* When we hear "dementia," we think only of advanced disease. "We don't think about the full continuum of the disease experience, such as people with early or moderate dementia. We don't often think about the person who drives her car from Reno to Carson City to present testimony at the state legislature, or the self-advocate who is writing a book about his experience to raise awareness. In fact, Dementia Conversations co-host Chuck McClatchey was diagnosed more than seven years ago, yet continues to host a national podcast, has a great golf game and enjoys cross-country travel.

See a list of dementia myths compiled with the help of Dementia Conversations participants

Moving forward

Carson hopes her work and that of the DEER Program, including Dementia Friendly Nevada, will help modernize and normalize thinking about dementia, and serve to protect the rights and inclusion of people living with dementia.

Anyone can take part in Dementia Conversations session by registering online. The sessions are conducted via Zoom, and there is no fee or criteria for joining. It is a public form, welcoming and inclusive of all. Here are the guidelines.

Other DEER Program details

  • The DEER Program at UNR is home base for the statewide Dementia Friendly Nevada (DFNV) effort, which has now expanded to seven areas, including urban, rural and tribal communities. Along with its many existing activities, DFNV is expanding its outreach and offerings for American Indians, Spanish-speaking groups and U.S. veterans.
  • The NEST Collaborative (NEST = Nevada Ensures Support Together), another statewide effort based in the DEER Program, provides free, volunteer-hosted virtual social support and technology assistance to elders, adults living with disabilities and veterans. The NEST helps people stay connected during the pandemic and beyond.
  • Carson herself has recently focused her research efforts on inclusive residential care and support for people living with dementia, challenging the segregated and locked memory care model.

Media Contact

Email: news@med.unr.edu

The University of Nevada, Reno School of Medicine, Nevada's first public medical school, is a community-based, research-intensive medical school with a statewide vision for a healthy Nevada. Established in 1969, UNR Med is improving the health and well-being of all Nevadans and their communities through excellence in student education, postgraduate training and clinical care, research with local, national and global impact and a culture of diversity and inclusion.

Released: Tuesday June 22, 2021 @ 7:00 AM