Florida has the second highest incidence of Alzheimer’s disease in the nation. A new initiative aims to make more communities across the state dementia-friendly. And, the first area chosen to pilot that effort is the state’s Capital City region.
Dr. Regina Sofer calls herself a “proud caregiver.” She cares for her mother who has Alzheimer’s and was officially diagnosed in 2008.
“I started my caregiving journey in 1995, when my dad had a stroke,” said Sofer. “And, then, in regards to caring for my mother, that started when I moved them here from Alabama with me in 2004. And, my Paps passed in 2008, and so there was the one-to-one because of the dementia diagnosis and the doctor indicated that she should not be left alone for any period of time and that’s when the joys and challenges really began.”
She says there are more joys than challenges.
“The joys associated with it are to see my loved one still smile at me, to make sure that she has her special treats, to know that she knows that she is loved, and that she is being engaged, even at the level that she is in her journey with this disease,” Sofer added.
Still, Sofer admits caregivers have to be prepared for the challenges that come their way.
“The challenges: energy level, resources, time, the whole issue of you becoming less of a person as you give yourself to another person,” she continued. “Those are real issues that every caregiver goes through and you have to balance that out to say that ‘this is not a short journey.’ You may have not known that going in, but the sustaining factor in most relationships is love and compassion.”
That’s why she’s on board with a new effort called the “Dementia Care and Cure Initiative.” It was recently unveiled by Florida Department of Elder Affairs Secretary Sam Verghese at the Tallahassee Senior Center.
“I’m happy here today to announce the city of Tallahassee and Leon County is going to be the first Dementia Caring Community in Florida,” he said, to applause.
It’s a collaborative effort between state, county, and local officials to make communities more dementia-friendly by taking action on the local level. And, Verghese says Florida has a real need.
“There’s over 500,000 people that are affected by this issue,” he added. “500,000 people that are diagnosed with Alzheimer’s alone just with one type of dementia. When you think about all the people that are affected, that includes the families, that includes caregivers, and there’s over 1.1 million caregivers that are dealing with dementia-related type issues. That’s a lot of people. That’s millions of Floridians living and dealing with this issue day in and day out and there’s thousands in Tallahassee alone.”
Verghese says through the initiative, they’ll take several different approaches, like raising awareness of the issue. That includes showing movies highlighting dementia. He says there’s also community assistance.
“We want to help first responders be able to identify how this might look if they were to run into it out in the street,” he continued. “We want to help medical providers, primary care physicians as they see people coming, patients. They’re the first line of defense when it comes to diagnosing this. So, we want to help them have an opportunity to understand the issue. And, then we talk about advocating for care and cure. That has to do with helping caregivers get help, like going to an adult day care center so that they can work a normal day job and not to have to always look after their loved one because with dementia, it’s kind of 24-7 monitoring type of situation.”
While Verghese says the overall goal is to spread this initiative statewide, right now he’s focused on seeing how things go in Tallahassee.
“So, we’re going to continually have feedback here about what’s working and what’s not working because I believe in doing things right where you’re at and seeing good progress and then moving to another community,” he concluded. “But, the key is this: it does no good to announce something if there’s not going to be real results.”
And, Tallahassee City Commissioner Gil Ziffer says he’s excited.
“So, we’re glad that Tallahassee and Leon County are a part of this, that we can have state, county, and city work together,” he said. “We’re going to attack this. We’re going to be the light at the top of the state shining down on all other counties and other cities. We’re looking forward to that.”
And, Sofer says she can’t wait as well.
“It’s going to make it easier for people to go into different venues and not have their loved one hidden or treated like a person non gratis because their loved one is still there. In spite of the manifestations of dementia, that person still exists,” she said.
The next step is for Verghese’s agency and local leaders to develop a Dementia Care and Cure Initiative Advisory council, develop a work plan, and start coming up with recommendations on how to proceed.
For more news updates, follow Sascha Cordner on Twitter: @SaschaCordner.