Fostering a sense of self in dementia care

Providing quality person-centered dementia care starts with providing a new mindset for caregivers and families, says renowned dementia researcher and author John Zeisel, PhD, founder and CEO of Hearthstone Alzheimer Care, in his opening keynote presentation at the Fall Memory Care Forum in San Diego.

Zeisel’s 2009 book, I’m Still Here: A New Philosophy of Alzheimer’s Care, has become the cornerstone of a dementia care model by the same name.

The focus of the philosophy is on helping people with Alzheimer’s disease regain a sense of self and to find joy in their daily lives. The model replaces the four As of Alzheimer's—anxious, apathetic, angry and afraid—with ability-based engagement for the resident and education for caregivers.

Staff caregivers and families should always be encouraged to research and learn more about dementia, Zeisel told attendees. “Curiosity leads to creativity,” he says. “Instead of getting frustrated by the difficulties of dementia, curiosity and learning change the view to one of hope and engagement in making the day better rather than ending a problem.”

Empowering caregivers in a new view of dementia allows them to pass the torch of education on to families, helping them to focus on their loved one’s abilities instead of their deficiencies. The mindset helps control staff burnout, including feelings of frustration and anger when negative behaviors occur. “Caregivers can then help families through the same,” Zeisel adds. “Because families go through a whole grief process when a family member is diagnoses with Alzheimer’s.”

Too many people limit the possibilities of engagement because of myths about dementia, he adds. Instead of assuming residents can’t do something, do whatever it takes to build a relationship with the resident and find out what brings them joy.

“We’re spending a huge amount of money trying to find a quick fix to dementia, but in reality, it’s a slow fix,” he says. “Every day, you’re doing what you can to make a difference.”

Learn more about the I'm Still Here model from the I'm Still Here Foundation.

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.