Born in Massachusetts, Debbie Selsavage, President and Owner of Coping with Dementia, LLC, spent 30 years in Pinellas County before relocating to Citrus County in 2000. She and her second husband, Albert, a Navy veteran, were drawn to the unspoiled beauty of the area and the world class bike trails. Five years later, Albert suffered a life-changing bike injury with brain concussion – which ultimately led to dementia. For Debbie, it was a time of tremendous grief, learning and an unexpected opportunity to change the way caregivers, and those in the medical community, approach and help patients and family members dealing with dementia.
“After Albert’s injury, he stayed at home for about five years while I continued to work full-time for the City of Inverness,” Debbie said. “As his condition progressed, we went to an adult daycare during the day. Eventually, as his Dementia got worse, that turned into full-time care at a memory care community. Unfortunately, he was badly treated in long term care. He became aggressive and spent 10 days in the Baker Act system, seven days in a hospital with four-point restraints and 12 weeks in a psychiatric hospital. No one wanted him.”
Debbie continued, “Four months before he passed away, I found a home in another county that took him in. They showed us a level of compassionate care we hadn’t seen before. He was greeted with open arms, hugs and love and – within a few days of being there – he was no longer aggressive. He died in August 2010, but spent his last few months in a much better place.”
During this difficult period in her life, Debbie was naturally drawn to the Long Term Care community and wanted to learn as much as possible about dementia. In 2012, she joined a facility in Citrus County as their Administrative Assistant, and within a year was recruited to become the Administrator at another community.
Around this time, Debbie met Ed Youngblood, her life and business partner, a former nonprofit manager and later, owner of his own publishing company. Together, they saw a need to spread the word about compassionate care, validation therapy and other forms of person-centered care and put together a conference for caregivers and others in the dementia community.
“We had over 200 people walk through the door,” Ed said. “That’s when we knew there was an opportunity for us to make an impact in this community. Here was this huge group of people who previously couldn’t find the support they were looking for. I said that day to Debbie, ‘I think you need to quit your job as an Administrator to focus on this.’”
Debbie added, “In late 2014, we talked about forming a company named after the conference – Coping with Dementia. Our mission was to provide a better quality of life for people with dementia and their caregivers. From my experience with Albert and my time as an Administrator, I knew there was a better way to treat these individuals.”
With a focus on education, workshops, seminars, certifications and training sessions for caregivers and patients, Coping with Dementia was official formed in early 2015.
“Debbie and I had a lot of conversations about whether we should structure ourselves as a for-profit or a non-profit,” Ed said. “My experience was primarily with non-profits. However, we decided that, with approval needed from the state and the need to establish a board of directors, the non-profit route would take too long to set up. We wanted to get this thing moving as fast as possible.”
Despite getting off to a quick start, Debbie and Ed faced a handful of challenges and even an early pivot not long after launching their business. When they first started out, they assumed their clients would be the professional care community – including memory care centers and assisted living communities. However, as Ed shared that wasn’t the case.
“They weren’t interested and, for the most part, they still aren’t,” he said. “We approached a business consultant named Mike Orlito who had a grant through the Chamber of Commerce to help small businesses develop strategic plans. He helped us review what we were doing and pointed out something we were clearly overlooking. He said, “Why aren’t you talking to the caregivers?’. Someone once said, ‘genius is recognizing the obvious’. It was obvious who we should be targeting after he pointed it out. That’s when we shifted gears and wrote our ABC of Dementia curriculum and workshop – specifically geared towards caregivers and families.”
Debbie added, “From there, our plan was to reach audiences of family caregiver, not professionals. We went to churches and libraries and would draw anywhere from 40 to 150 people for our workshops. We were finally helping the people that didn’t know about how dementia affects the person they were taking care of – that was the direction we wanted to go in.”
Debbie and Ed created a certification program where churches and businesses could become a ‘Certified Dementia Friendly’ place. To date, about 60 groups have been certified. Along the way, Debbie and Ed also created a monthly e-newsletter to stay in touch with clients and inform the community about Dementia related news and events. After four years in circulation, that distribution list has grown to 4,700 recipients.
“It’s another avenue for us to get resources out,” Debbie said. “We want people to know they’re not alone. This is a really tough disease. Just talking about it and not giving them resources is not going to help them. We’re doing everything we possibly can to help.”
In addition to the newsletter and the 5,000 people they’ve reached through 40 workshops and 75 speaking engagements per year, Debbie and Ed also created the first ever Alzheimer’s walk in Citrus County. As a result of the increased exposure and publicity, they were asked to do a monthly column in the local paper called Coping with Dementia. From that opportunity came other opportunities to write for Dementia related publications.
“People saw the column in the Citrus County Chronical and now we have a monthly column in Senior Voice,” Ed shared. “We also write for an online magazine called NatureCoaster.com and Best Version Media that produces a neighborhood magazine for upscale gated communities throughout Florida.”
In August 2018, a year after being recognized by Citrus County as a Healthcare Hero for community outreach for the work they’ve done to bring dementia out of the shadows, Debbie and Ed created a non-profit called Dementia Education Inc. As they shared, the non-profit was just another way to reach as many people as possible in the most effective way.
“There were certain things we were doing that were better suited for a non-profit,” Debbie said. “Things like creating publications and handbooks. Our non-profit is dedicated to the belief that education is essential to knowledge and discoveries that will lead to a better quality of life. We want to further the public’s understanding of memory diseases in ways that will result in more compassionate acceptance and better care of individuals living with Alzheimer’s and other forms of dementia.”
Looking ahead, Debbie and Ed, both Certified Dementia Practitioners, are focused on growing all aspects of Coping with Dementia and Dementia Education Inc. As a result of the COVID-19 Pandemic, Debbie has developed a successful online caregiver support group and will continue to do several live online sessions per week. Even though this is fairly new territory for Debbie and Ed – they prefer in-person training – the use of a virtual environment has proved to be more effective than anticipated.
“We have always resisted turning our workshops into webinars,” Ed said. “We used to think it was impersonal, but we’ve been surprised lately. We originally went into online support groups because it was our only alternative. It wasn’t our first choice, but it’s been successful. I almost think it’s been more successful than the live support groups because we can do them more frequently. I think we’ll eventually find a way to do our training online, but we’re not sure the medium is there yet.”
Ed continued, “Looking long-term, we have a dream that we’ve placed in the hands of our non-profit. We want to see Citrus County become the site of an internationally recognized institute for person-centered compassionate care. We’re not talking ‘cure’ research, but a learning facility involved in techniques of care to improve the quality of life for people and families dealing with dementia. Compassion is not like drugs – it doesn’t cost you a penny.”
Debbie added, “They have research centers for pharmaceutical-related cures or drugs that would alter behaviors. We’re not looking towards that as much as we are therapies and other methods of treatment. A lot of professional facilities don’t use these proven techniques. We want people to come here and learn that there are effective alternatives.”
“Our vision for the non-profit,” Debbie continued,” is a little-known passage in the Modern Hippocratic Oath: ‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.’”
What advice do Selsavage and Youngblood have for aspiring entrepreneurs? “I would tell anyone to apply to SCORE for help,” Youngblood said. “Get an experienced team to bounce your ideas off of. I once wrote a book about a man who revolutionized the motorcycle industry and his son said, ‘My father always had a vision, but never had a plan’. The rest of the family had to create the plan. Most entrepreneurs work on a visionary level, where they don’t have the time and mentality to deal with the boring nuts and bolts of the business. Get someone to help you with this aspect. We were a year in when we did that. The light bulb went off to find a person with experience. They don’t need to know your business. Your job is to describe your vision and then let them show you how to get there.”
Youngblood added, “I would also say that you need an incredible amount of patience. You can see so clearly what you believe in and you think it’s logical to everyone else, but you’ll get sick and tired of articulating what you want over and over and over again. It’s important to hang in there and to understand that it’s a learning process to get others involved. That takes patience. It also takes un-dying optimism. When you go up against something that kicks you right in the gut, you need to step back and look at it as an opportunity to see what it’s teaching you. We’ve had plenty of those along our journey.
The last thing I’ll say is that collaboration is key. Look for points of synergy and work with other individuals and organizations. My attitude is that the goal of business is not to turn a profit, it’s to create a product and/or service that is superior and to put your money into your best resource which is your community and your employees. If you do that, profit will be a by-product. When you pursue profit only, you lose sight of quality, performance and humanity.”
Debbie added, “For me, starting a business was uncharted territory. However, I had the experience of going through what I did with Albert, and I knew that I wanted to let people know about the disease and that it doesn’t have to be an awful journey. I just love being out there talking to people and I love to see that light bulb moment for them. I want to know I’ve made a difference with our monthly columns, newsletters, website, and training sessions. Lastly, like Ed mentioned, we pride ourselves on building relationships with different avenues of resources. I think this is key to building a great business.”