How Dementia Friendly Denver Fosters Inclusive Communities

We’ve all seen the discouraging statistics: an estimated 5.1 million people in the United States age 65 and older are suffering from Alzheimer’s disease, and that number is expected to grow by 40 percent during the next decade. Alzheimer’s disease comes in at sixth on the list of the Top 10 causes of death in the U.S. and is the only cause on the list that cannot be prevented or cured. The disease’s progression cannot even be slowed.

These numbers – and the realities that they represent – are daunting, but there are signs of hope sprouting up across the country, including efforts by the federal government to promote innovative support systems at the local level. One such example is Dementia Friendly America, an initiative that was launched at the White House Conference on Aging in 2015 and put into action soon thereafter.

The initiative is creating a nationwide support network to help people living with dementia, their caregivers, and their families. The goal is for these communities to further the ability of individuals with dementia to not only stay in their communities but to thrive in them.

Denver was designated as one of six pilot areas, and Dementia Friendly Denver (DFD)has been making a positive impact in the Greater Denver area ever since. JJ Jordan joined DFD in late 2015 as the community chair and soon found herself leading a steering committee of 10 volunteers that provide outreach and advocacy for those living with dementia.

Longevity Colorado recently spoke with JJ about how she and DFD are working within the Denver community to help educate the public and connect individuals with dementia along with their caregivers and families to crucial services and resources.

“I can’t rest until we get this thing called dementia off the planet.”
– JJ Jordan, Dementia Friendly Denver

JJ Jordan: I had a successful career in the corporate world when three out of four of the older parents in my family were diagnosed with Alzheimer’s all within 18 months of each other. This changed everything in our lives, including my career. I call them my “Lovies” and each lived for 16, 14, and 11 years with the disease. When I first started helping my family members, I wished I had some formal education or at least had a resource like DFD, since it took me a long time to discover the types of support services that are available. .

After our last Lovie left us about five years ago, people would ask, “Aren’t you glad to be done with all this?” And I’d say, “Oh, no. I’m just getting warmed up. I can’t rest until we get this thing called dementia off the planet.” I got the call in late 2015 to chair the committee, and we went right to work and set up a steering committee in January 2016. Ever since then, everything I do both professionally and philanthropically is in the field of dementia care and caregiver support.

JJ: When we started DFD, we needed data, so we sent out over 1,000 surveys to caregivers and providers and asked them where they saw gaps and weaknesses in dementia services offered in Denver. The high response rate showed that there was tremendous interest and that the top concern was the cost of care. Other concerns were community awareness and education, then caregiver support, followed by concerns about stigma.

This feedback helped us shape our strategic focus during our brainstorming sessions into ten sectors including: government, business, and healthcare. We then set up focus groups and interviewed people from each sector. We came up with over 300 ideas to make Denver more dementia friendly. We whittled that list down, which resulted in the creation of a series of project areas that people can quickly reference on our website.

JJ: Our most important project focus area is community education. We provide a free, one-hour learning session called “Dementia 101: Reducing Your Risk,” which covers the basics of dementia, warning signs, communication tips, and how to get a diagnosis. We also talk about the latest research since we’re extremely optimistic that a breakthrough is around the corner. We end the session talking through steps that everyone can take, even when they’re young, to reduce the risk of early onset.

Another of our projects is producing educational materials and website vignettes that will help explain common concerns such as Medicare, Medicaid, guardianship, probates, and how to manage personal finances and planning that is being written by attorneys and financial professionals on our steering committee.

We’re also working on translating our materials into Spanish and doing as much outreach as possible to the African-American and Latino communities. Those folks have a higher incidence of Alzheimer’s disease, so we want to make sure they receive our materials and presentations.

Overall, we’ve had a great impact on thousands of people in our community, and we’re hoping to spread our program throughout the state. I encourage anyone who wants to book a learning session, get involved, or start a Dementia Friendly initiative in their town to contact me.

JJ: We are geared toward helping the care partners that are serving the 50+ population. For example, whether they are family members or professionals, we help by showing them how to connect to the medical community.

Geriatricians and neurologists are the best people with the right skill sets to work with dementia patients. Neurologists can give the critical, detailed diagnoses, as it’s so important to first find out what you’re dealing with because there are several forms of dementia that have different behaviors and treatments.

JJ: There are more clinical trials in later stages than ever before. Some of those trials deal with the prevention of dementia, not just treatments and cures. The U.S. has a National Alzheimer’s Project Act that was written into law in 2010 that calls for treatment, cure, and prevention by 2025.

I am also a public policy advocate for dementia and work a lot with (the United States) Congress. We just passed an especially important piece of legislation called the Building Our Largest Dementia, or BOLD, Infrastructure for Alzheimer’s Act. BOLD will authorize $100 million in funding for five years to help combat Alzheimer’s. Among many things, it creates funding for local health departments for both early detection and diagnosis. It also compels the CDC to get involved so that we’ll have better reporting on statistics.

This is a great legislative step, and we’re already deeply involved here at Dementia Friendly Denver. Colorado is right in the middle of it, and we want to keep spreading the word. We want to help. We want people to call us.

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Highlights

Recommended Resources

TED talk: Alzheimer’s Is Not Normal Aging Scientist Samuel Cohen shares a new breakthrough in Alzheimer's research from his lab as well as a message of hope.

Alzheimer’s Association: Information, tools, and resources for understanding life and caregiving with Alzheimer's and dementia.

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