Focusing on the People, Not the Disease
January 17, 2020 | by Gene Mitchell
A look at this issue of LeadingAge magazine.
A look at this issue of LeadingAge magazine.
“I work with people with various disabilities or diseases, and when people identify so strongly with what’s wrong with them it takes them down. When they identify as who they are and use those to cope with challenges, they do better.”
- Maureen Rulison
Maureen Rulison knows what she’s talking about. Partly, that’s because through her company, Caregiver Support & Resources, she does life care planning, and is in constant contact with people and their families living with dementia and other conditions. But she also lives—literally—with the reality of Alzheimer’s disease because her significant other, Brian LeBlanc, was diagnosed with Alzheimer’s before their relationship began.
I spoke to LeBlanc and Rulison early in January, about a month after they had begun living together near Tampa, FL. It was a funny and moving conversation, enough to shatter whatever remaining stereotypes any of us might have had about people living with dementia.
“I used to say I was living well with Alzheimer’s,” says LeBlanc, who is active in the Dementia Action Alliance and does a lot of public speaking around the country. (He spoke at the 2019 LeadingAge Annual Meeting & EXPO in San Diego.) “But this last June I had a triple bypass, and was told I also have vascular dementia. I’ve had Type 2 diabetes since the 1990s. Living well with dementia just means we’re doing a lot of things now I never dreamed.”
LeBlanc’s family has a multigenerational history of both Alzheimer’s and vascular dementia.
“Even so, I had no idea what it was like to live with it,” he says. “I knew that if I didn’t give it 1,000%, then I was going to decline. So I knew I had to use my skills to talk about it. You have so many physicians, so many professionals, that talk about people like us, but then I thought, why aren’t people like me talking about our own disease, and […] what it does to your brain and body?”
LeBlanc is in high demand as a speaker—he’s booked through August—and combined with Rulison’s professional experience, the 2 of them are opening a lot of eyes.
“There are a lot of us out there now, speaking, and we all have the same message: basically, that instead of being ignored, we want to be engaged and empowered and enabled,” LeBlanc says. “We face many obstacles, but we keep pushing, and overcome the majority of them.”
LeBlanc and Rulison will be among the guests included in the next episode of LeadingAge’s Aging Unmasked podcast series, this one focused on love and romance. They are a witty and engaging couple, so be sure to listen. Aging Unmasked host Charlie Visconage will release that episode next month, in time for Valentine’s Day. It will also include the story of the Hebrew Home at Riverdale’s “g-date” program and examine other interesting (and fraught) issues involving romance in the lives of the people our members serve. Past episodes of Aging Unmasked can be found at Apple Podcasts, SoundCloud, and at LeadingAge.org.
I still remember how much my talk with LeBlanc and Rulison cheered me up, because, honestly, thinking about dementia usually sends me in the other direction. Both my mother and my father-in-law had Alzheimer’s, and the sadness of what I saw sticks with me.
At the same time, both benefited tremendously from the kindness and skill of the professional caregivers that served them. One reason I’ve so enjoyed working for LeadingAge is that our members exhibit those qualities every day, and they never stop trying to improve the art of caring for people living with dementia
We lead off with an interview of the new LeadingAge Chair, Carol Silver Elliott. She tells us what motivates her, and shares her priorities for her 2-year term. Read “The Blessing of Meaningful Work.”
“Dementia-Friendly, Person-Centered Innovation” focuses on the work of several LeadingAge members, each implementing different approaches. Despite a few different emphases, all make the dignity, fulfillment, and wishes of the residents the top priority.
“New Effort Marries Research and Quality Dementia Care” looks at the IMPACT Collaboratory, a new effort (involving a prominent LeadingAge member organization) to encourage more pragmatic clinical trials into the development of care innovations.
Technology not only helps providers provide services more efficiently, but is teaching them to see the world through the eyes of people living with dementia. Read “Technology Tools for Better Dementia Care” for some member examples.
I attended an excellent education session at the 2019 LeadingAge Annual Meeting & EXPO, presented by Andrew Esch, M.D., and Maribeth Gallagher, a psychiatric nurse practitioner, on ways to better serve family caregivers. It inspired “Help for Overwhelmed Family Caregivers,” which includes more about their work. It also includes an introduction to the Skills2Care model for helping Alzheimer’s caregivers.
The latest installment of our “People We Serve” series looks at another group of remarkable older adults that live in LeadingAge-member communities. Read “Fans, Filmmakers, and Beekeepers: These are the People We Serve.”
Finally, a bittersweet farewell: “The Members Make it Hard to Leave” is an interview with Barbara Gay, former LeadingAge vice president of public policy communications. Barbara retired at the end of 2019, but we asked her for some recollections before she left, after 25 years of valuable service to our members. If you’ve been reading what LeadingAge has published during the last quarter-century, you’ve read a lot of Barbara’s words.
Gene Mitchell is editor of LeadingAge magazine.