Lessons from Mary

What do residents with dementia really want from caregivers and families as their diseases progress? How would they define quality of life? How do they want to be treated? These are questions every caregiver wonders but is probably afraid to ask.

I recently had the great honor of spending a day with Mary L. Radnofsky, PhD, who presented at the 2017 IASC Spring Memory Care Forum in Philadelphia on how the long-term care industry can rethink the dementia conversation for the better.

Mary L. Radnofsky, PhD

As a Georgetown University educator and founder of the Socrates Institute, she spent years teaching students in human rights, research, literature, history and even astronomy. Now, as a book author and speaker, she teachers senior care providers how to interact with and support people with cognitive decline. Among her other endeavors, she’s currently writing a book with renowned gerontologist, G. Allen Power, MD, on practical ways to support the well-being of people with dementia, based on the United Nations Convention on the Rights of Persons With Disabilities.

Mary lives with subcortical leukoencephalopathy, a relatively rare type of vascular dementia that affects the subcortical white matter of the brain, so she has plenty of first-hand info to share on the topic.

“What do you think frustrates a person with dementia?” she asks the packed room of caregivers and administrators. Among the top answers: Not being listened to, not being able to communicate and being rushed through decisions and tasks.

Caregivers and families tend to rely on their own assumptions of the condition when it comes to interacting or even discussing dementia diagnoses, and those assumptions can negatively impact the quality caregiving and support process, Mary says. For example, some people feel so uncomfortable discussing the disease they just skip over the whole dementia topic, acting like it isn’t a factor. Others may gush over every tiny accomplishment or speak to residents like they’re puppies, inadvertently burning the whole dignity goal in the process. As a caregiver, she says, “You have to listen hard to yourself and then figure out what you should be saying instead.”

Providing resident-centered care includes those with dementia, and residents should always be involved in daily decision-making to the extent they are able to participate, from mealtime food choices to when to take a walk in the courtyard, she insists. Above all, she assures the audience, negative behaviors are a form of communication. “The rocking, the hand-pounding or the shouting every time you start to walk away, it all means something. You just have to figure out what it is.”

A hand goes up in the crowd and someone asks The Big Question: “But what happens if the residents can’t tell me what they want?”

Mary pauses, then answers, “Well, my verbal skills are still pretty good, but there will come a time when I won’t be able to communicate with you in words, like I am now. But I will still have feelings, and I still matter. So, you’re going to have to get to know me better and find another way to communicate with me. Because that’s your job.”

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.