Alzheimer's blog

See the person, not the disease, with Alzheimer's caregiving

By Angela Lunde July 10, 2014

Last time, we spoke about wandering, a label we often attach to a person living with Alzheimer's.

It's natural to attach a label to something we don't completely understand or like. Think of other labels we use and apply in the context of dementia.  We label a person as a way to explain their so called "behaviors" with words like: resistive, hoarder, screamer, pacer, or sundowner.

To identify the person, some may refer to them as a patient, sufferer or victim. We describe a place of residence as a unit, facility or memory wing.  We talk in terms of deficits and losses and may think about the person as child-like, incompetent, less-than or no longer there.

No wonder so much fear and stigma surround Alzheimer's. The labels and words not only send a message to those who hear them, but they also reinforce stereotypes and perceptions in our own mind that then influence our attitudes and our behavior.

If we use the word patient in our everyday interactions when referring to people living with dementia, then we see a medical diagnosis before we see a person. We focus on the deficits without seeing a whole person.

Similarly, if we refer to people victims then we think of them as a victim and we react by treating them as if they're helpless and without the capacity for quality living.

If we say someone has behaviors then we think of the person or their disease as the problem. When we assume a person is no longer capable based on a diagnosis, we start taking over. When we believe in our mind that a person with dementia is child-like it changes how we communicate with them.

A study published in the American Journal of Alzheimer's and other Disorders demonstrated that "restiveness to cares" in those living in a nursing home was significantly higher when staff communicated using "elderspeak" as opposed to normal adult communication.

Elderspeak refers to infantilizing and patronizing communication, similar to baby talk. It includes simplified grammar and vocabulary, as well as overly intimate terms of endearment.

Because many folks living with dementia can't effectively communicate their needs (concerns, grievances) verbally, they compensate with non-verbal communication. This often gets labeled as "resistive."

Bottom line, they're simply trying to communicate in the best way they can, and in this case, it's the need to be treated as an adult —  further evidence that persons living with dementia know when they're being treated with dignity and respect or not.

Every person living with dementia embodies a unique history along with personal values, preferences, strengths and abilities.

And although it can sometimes be difficult to always know what someone with dementia is capable of, and it can change from day to day, they can often do much more than we think.

Some of what contributes to "problem behaviors" in persons living with dementia is their need to contribute, to feel useful and to function independently

Sometimes all it takes is to break a task down into smaller steps, offer some cues to help them get started, and then allow a bit more time. Each of us has a basic need to be engaged in meaningful activities and in life.

There are justified explanations for why a person living with dementia behaves or reacts in a particular way. If we believe that everything has meaning behind it, then our relationship to the person living with dementia dramatically changes. We see a person, not a disease. And that person will tell you everything you need to know once you pay attention with your eyes, your ears, and most of all your whole heart.

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Jul. 10, 2014