CLEARWATER, Fla. — Alzheimer's Disease Awareness Month may be coming to an end, but the founders of the non-profit "We Are Dementia Strong" work all year long to provide education on the illness and end the stigma surrounding it.


What You Need To Know

  •  We Are Dementia Strong is a non-profit that aims to provide education about and end the stigma surrounding Alzheimer's and dementia

  •  The non-profit was founded by Brian LeBlanc, who has Alzheimer's, and his life/care partner Maureen Rulison

  •  The couple published a magazine that offers patients and their loved ones guidance on steps to take following a diagnosis and resources

  • Read previous coverage with LeBlanc and Rulison here

“A diagnosis of dementia does not mean you’re going to the nursing home tomorrow,” said We Are Dementia Strong Founder and President Maureen Rulison. “You have a lot of life left and a lot of things to accomplish.”

Rulison’s life partner and co-founder, Brian LeBlanc, is an example of that. LeBlanc was diagnosed with early onset Alzheimer’s in 2014 and became active in advocacy work. 

“After you’ve been given the diagnosis, you are... being in a boat by yourself and just kind of floating along,” LeBlanc said.

To provide patients and their loved ones with some guidance, LeBlanc and Rulison published the magazine, “What To Do After A Dementia Diagnosis”. It includes advice on the importance of staying social after a diagnosis and forming a care-partner team, as well as legal and financial planning. 

“No place, no person is going to be your one-stop shop,” Rulison said. “There’s expertise that you need in all different, or many different, phases of professional life as you’re going through this journey.”

Rulison and LeBlanc based the advice on their own experiences. For instance, Rulison said she learned the hard way it’s important to have back-up plans when it comes to care-partner systems.

“I got pneumonia the Wednesday before Thanksgiving, and everyone was out of town,” Rulison said of a previous year’s holiday. “So, we went back and added into the magazine, do a ‘fire drill’ on your plan.”

Also included are articles from LeBlanc’s blog that give a first-person account of living with Alzheimer’s. He said there’s a stigma associated with the illness he wants to help end.

“They do what I call ‘the head tilt,’” LeBlanc said of some people he encounters. “And they go, ‘So, Brian, how are you doing?’ Because they don’t know what else to say. It’s like - just come talk to me.”

LeBlanc and Rulison also answer questions on the non-profit’s website and Facebook page. 

According to the Alzheimer’s Association, 580,000 people age 65 and older are living with Alzheimer’s Disease in Florida. Over 800,000 family caregivers are looking after them. Find more information on Alzheimer’s and resources here or call the Alzheimer’s Association’s 24/7 Helpline number at 1-800-272-3900.