LeadingAge Magazine · March-April 2017 • Volume 07 • Number 02

Improving Language and Examining Attitudes

by Lynn Szender

I think ageism crops up in our work in many areas.

Lynn Szender
Lynn Szender

The language we use: I was recently asked to give feedback on our website, as we are looking to update it, and was struck by some language that leapt out at me as subtly communicating ageism.

For example, when discussing our memory support unit it described a goal of “retaining self-worth.” The assumption is implicit that with a diagnosis of Alzheimer’s disease or other dementing illness, your self-worth is in question. It’s one thing for a person to say they feel a challenge to their self-worth because of what they are facing and the losses that come with cognitive impairment, but it’s entirely different for anyone else—including an organization—to suggest that self-worth is in question.

We’ve been trying to change the word “care” to “service” when describing what we do for people. It’s a way of moving away from the notion of dependence—even if it is a fact that a person needs services daily.

The way residents talk about themselves, about each other and about those with significant challenges is a big factor in the manifestation of ageism—but it’s not about blame. After all, they’ve been living in a youth-focused culture and still do.

The way we develop policies and procedures: Is the voice of those we serve represented? If this is their home (and it is), how much do the residents define it? How well do we partner?

I think we do a good job on this in our community, but any time we get to promulgating something or other without including resident feedback it generally comes back to bite us, because our residents do feel empowered to speak up and challenge us. This isn’t a simple topic, though; it’s a challenge to balance operational decision making with input that can be never-ending as well as conflicting.

Fixes: We have a long-standing culture change team currently working on the notion of creating a truly inclusive community that doesn’t see the answer to challenges as segregation or simply a problem to be removed from sight somehow.

For example, a memory-support secure unit may be needed for some folks with cognitive losses but certainly not for all. Who wouldn’t be afraid of saying that one needs some help with cognitive loss, if there is a pervasive notion that this is to be hidden because it is embarrassing or will mean a move to a memory support unit or other health service community?

The way we support the strengths that remain, value all members of our community and support everyone (all of us!) is the key to reducing the fear of “decline” or needing some help.

The way employees sometimes talk or joke about their own future is sometimes reflective of ageism. The notion that aging and cognitive loss are inextricably tied together is pervasive—it’s one of my “soapboxes” with people. If they suggest it in conversation I kindly offer examples of people who are antithetical to that notion.

We’ve tried to move away from calling non-health-care residences “independent living” since it suggests that independence is lost if you live in assisted living or any of the communities where health care services are available 24/7. It takes a bit more effort to describe that group of residents as we do: “living in apartments and villas,” and it is only staff who have tried to make this change.

We recently had a speaker come to address residents and staff about how to support residents with cognitive losses. We were allowed to videotape it, and plan to use the presentation in onboarding and ongoing resident education.

Our vision is to make this a community in which people chose to live because it is inclusive. We were inspired by Clermont Park in Colorado, based on a presentation we saw from Kirsten Jacobs of LeadingAge. We sent one of our managers there to visit because of that presentation and what they described achieving.

I am very excited about working on this issue, both as a community and as a society, so it’s wonderful to see LeadingAge’s focus on it. I believe it is key to the future of aging services and to all of us as human beings, aging every day.

Lynn Szender, RN, LNHA, is director of healthcare services for Mary’s Woods, Lake Oswego, OR.

 

Jill Vitale-Aussem
Jill Vitale-Aussem

What if Kids Got Dementia?

by Jill Vitale-Aussem

One of the most well-known un-filmed screenplays of 2015 was a comedy about former president Ronald Reagan and his life with Alzheimer’s disease. Billed as a “hilarious political satire,” the screenplay featured an intern tasked with convincing Reagan, originally to be played by Will Ferrell, that he is an actor playing the president in a movie.

As one might imagine, the Reagan family and the Alzheimer’s Association were outraged. Ferrell wisely backed out. But this whole scenario suggests another question: Why did Hollywood execs and numerous others think a comedy about Alzheimer’s disease was appropriate?

After studying ageism for a number of years, this is my conclusion: It’s okay to make fun of Alzheimer’s disease because it is an aging-related disease. Our society devalues older adults. And because we devalue them, we devalue those living with dementia. We joke about them. We marginalize them. And we segregate them from society.

For a moment, let’s imagine a very different scenario, one in which the millions of people living with Alzheimer’ disease and other types of dementia weren’t old folks … but were kids.

What would be different?

Would we make jokes and comedies about these kids? Would we segregate them from their peers? Would we keep them in locked units? Or, would we find ways to value and honor these children and keep them connected with people and society?

I suspect we would see inclusive schools and playgrounds where kids living with dementia would be playing with their friends. Where their peers would be educated about dementia and would learn how to be kind and supportive friends. And if there was even a whisper about a movie that would denigrate these kids, or a mention of plans to segregate them, there would be boycotts and rallies and outraged celebrities fighting for change.

Alas, our current situation doesn’t generate this kind of passion or interest from the general public. Ageist beliefs are far too ingrained and accepted in our society. Folks like Dr. G. Allen Power (author of Dementia Beyond Drugs and Dementia Beyond Disease) are challenging us to rethink segregation and secured units but the topic is still far from the mainstream.

It’s time that we start asking seemingly strange questions like, “What if kids got dementia”? It’s by looking inside ourselves and asking these tough questions that we will begin to make a dent in the fight against ageism and uncover the hidden bias and prejudice that guide so many of our decisions.

Jill Vitale-Aussem is chief operating officer for Cappella Living Solutions (a service of Christian Living Communities), Greenwood Village, CO.

 

Authentic Communication is Always the Best Choice

by Patty Crawford

The assignment seemed simple: “Listen to your workplace.”

Patty Crawford
Patty Crawford

When I looked around the Augsburg College classroom, I realized I was the only one whose workplace involved serving elders.

We had been discussing language and leadership, an interesting topic covered in the Masters in Leadership program I was in. The bankers, journalists and insurance executives there would probably recognize power relationships and informal leaders. I, on the other hand, was about to open a door that would give me a deep understanding of how a sincere mission and desire to serve can still fall short of its goals.

A brief ethnography revealed that the language in my workplace changed dramatically from normal speech between co-workers when an elder client entered the room. I had stumbled on elderspeak, sometimes referred to as secondary baby talk, a significant part of the speech environment of institutionalized elders. This was first researched as far back as 1981.

In the months that followed I searched the literature for a deeper understanding of elderspeak, why it happens and how it affects those we serve. It soon was clear that the overarching element of ageism in our society played a part in the creation of this synthetic speech style. It made me realize that our organizations have spent much time and resources on creating environments that don’t look like institutions. However, they have not focused on how we communicate.

The separation created by language explained why we have environments where elders no longer talk to each other. The existence of elderspeak erodes self-esteem and chips away at identity. This creates an isolation that is something out of my worst nightmare. What if I am in an environment filled with people, yet I feel isolated and lonely?

Upon completing my Master’s in leadership, I realized it had little to do with advancing my career. What I felt called to do was provide education and enlightenment to people who do the hands-on work every day. The literature review showed me that awareness was the first step. It is when we listen to ourselves and the environment that we realize elderspeak is alive and well in our organizations. This is delicate work.

Caregivers do not intend to cause harm or create separation. Work that is filled with directives and repetition always seeks ways to soften those elements. The last thing I want to do is shame caregivers.

However, I seek to show them that authentic communication is always the best choice. It is in authenticity that we share stories and knowledge. It balances my role of caregiver to feel that I give and I receive.

Imagine a world where we have connected old age back onto the train of life. Imagine that we will not be afraid. Imagine that the changes in my ability have a purpose and I have value!

Patty Crawford is manager of Augustana Open Circle Adult Day of Apple Valley, part of Augustana Care, Minneapolis, MN.