Dementia Friendly America (DFA) is a national network of communities, organizations and individuals seeking to ensure that communities across the U.S. are equipped to support people living with dementia and their care partners. The DFA movement began in September 2015 following the White House Conference on Aging and is based upon Minnesota’s statewide successful initiative, ACT on Alzheimer’s. As momentum grew and the winds blew west, something intriguing happened. Nevada’s network of aging services professionals insisted it become a collaborative effort throughout the state.
Nevada is aging faster than any other in the continental United States, according to a 2018 comparison by U.S. News & World Report. (Only Alaska is aging faster.) Officials estimate that nearly 50,000 of Nevada citizens are living with dementia, and that number is projected to increase 36% over the next five years.
Nevada’s dementia-friendly movement began when aging services organizations knitted together a network of interested advocates. It included the state’s Aging and Disability Services Division (ADSD), Nevada’s two Alzheimer’s Association chapters, Nevada AARP, the Cleveland Clinic Lou Ruvo Center for Brain Health, Nevada Rural RSVP, and the Sanford Center on Aging. Also invited were other members of the aging services network, including: University of Nevada, Reno researchers; faith-based organizations; law enforcement officials; first responders; and members of the business community.
A preliminary meeting was held in 2016 connecting participants north and south with a video link between Las Vegas and capitol Carson City, which welcomed partners from nearby Reno.
“It was a very good cross-section of people,” says Mary Liveratti, who with a 30-year history in Nevada aging services later became Chair of the Dementia Friendly Nevada Statewide Workgroup.
Of the many issues first discussed, one was whether to split Nevada into north and south, but that was quickly overruled to ensure the state worked holistically. Central to the meeting was a review of a dementia grant available from the federal Administration for Community Living — critical seed fundsneeded to launch Nevada’s efforts.
Over the next five months a group of five committed grant writers led by ADSD’s Jeff Doucet worked tirelessly to submit a solid proposal, and a few months later, ADSD was awarded the ACL grant.
Dementia Friendly Nevada (DFNV) used the $1.2 million, three-year grant money to initially fund four community action groups, or CAGs: Dementia Friendly Washoe County; Dementia Friendly Southern Nevada Urban (i.e., Clark County); Age- and Dementia-Friendly Winnemucca; and Dementia Friendly Elko. In 2017, two more CAGs joined the statewide effort, Dementia Friendly Pahrump and the Pyramid Lake Paiute Tribe’s Pesa Sooname Advisory Group.
Each CAG received seed money of $10,000. Upon completion of Dementia Community Assessment, which illuminated strengths, gaps and top priorities for their area, each CAG used their funding to mobilize toward community-driven goals.
“The needs in Washoe County are very different than those in Las Vegas, Winnemucca or Elko,” says Dr. Jennifer Carson, who joined DFNV as its lead facilitator, directly supporting four of Nevada’s six CAGs. Director of the Dementia Engagement, Education and Research Program at the University of Nevada, Reno, Carson traveled throughout the state helping the CAG’s get off the ground by offering guidance and resources.
Meanwhile, the DFNV Statewide Workgroup continued to meet and eventually created a set of “mobilizing beliefs” that are among the most progressive in the country.
Committed to a ‘nothing about us without us’ approach, “All community action groups are committed to including people living with dementia as our partners in decision making. They are the true experts on the lived experience of dementia,” says Carson.
Since DFNV’s inception there have been a steady stream of successes. For example, Washoe County has created a weekly dementia-friendly partner dance class and monthly peer support opportunity. Southern Nevada Urban has developed sector-specific Community Awareness Trainings and provided hundreds of cognitive screens in the community. Winnemucca has fused its age- friendly and dementia-friendly efforts into a single powerful initiative with dozens of impactful goals. The Pesa Sooname Advisory Group hosted a landmark Tribal Summit on Brain Health and Dementia targeting American Indians throughout Nevada. Pahrump hosted a community screening of a research-based drama about dementia for 65 community members and provided a 10-week care partner education series. Elko launched a weekly, volunteer-driven peer support and respite program called Friend’s Day Out. And these are just a few examples.
Five of the six CAG’s embraced Dementia Friends awareness training, while the sixth, Dementia Friendly Southern Nevada Urban, created a unique program targeting specific sectors of community. Champions have been trained in each community to deliver the programs.
In other words, each community has created unique local dementia programs while receiving statewide support and inspiration from one another.
“The communities have to be the drivers,” says Carson. “It’s not outsiders coming in with their ideas for transformation. Instead, local community members know what works best in their community.”
DFNV’s partners remain deeply appreciative of the state’s collaborative nature.
“Dementia Friendly Nevada has been a joy because people north and south, statewide, have been willing to share ideas and resources,” says Liveratti.
One of many examples is how Dementia Friendly Southern Nevada Urban used some of their funding not only to create its own website, but included all the CAGs in the process, under a Dementia Friendly Nevada umbrella. Now each CAG has its own webpage.
“Being able to partner with colleagues from around our state has made advocating for change a more inspiring endeavor,” says LeeAnn Mandarino, who co-facilitates Dementia Friendly Southern Urban, headquartered in Las Vegas. “Collaborating with people who share the same mission and values strengthens our work and effectiveness. We share the same government and the same laws and regulations, so working together to advocate for policies has helped set a solid foundation for creating a state that takes care of one of its most vulnerable populations – individuals with dementia.”
Carson is further complimentary of the CAG co-facilitators, with special appreciation for DFNV Statewide Workgroup Chair, Liveratti.
“She’s a collaborative leader who knows people in every community and resources available across the state,” says Carson. “She’s definitely foundational to our success.”
Carson also credits ADSD for their leadership role in convening this successful statewide initiative.
“Our partners at ADSD live the value of inclusion.”