Nonviolent Communication™ Skills and Dementia

“Dementia is an illness that causes no physical pain…just ask anyone who cares about someone with Alzheimer’s or another dementia if their heart isn’t aching. The pain in dementia comes from feeling hopeless, alone, or disconnected from loved ones—but a broken relationship can be healed.”

-Pati Bielak-Smith

More information on this topic is coming soon. In the meantime, please click here to access the full chapter one of Dementia Together by Pati Bielak-Smith or read an excerpt below.

Acknowledging
What’s There

Lucia is a friend of mine who emigrated from South America at a young age. Now living and working in Europe, she sees her mother only once a year. On one visit, she arrived to find that her mother was showing signs of dementia.

“Where are you? Are you there?”

“Yes, Mum, I’m right here.”

“I can’t see you.”

“That’s because your eyes are closed. To see me you need to
open your eyes.”

Lucia’s mother forgot that she has to lift her eyelids to be able to
see. Due to dementia she has lost this basic knowledge.

Dementia is a word that describes a group of symptoms that result from damage to the brain caused by disease. Dementia can be caused by several different factors affecting the brain. The symptoms are progressive, usually beginning slowly and imperceptibly, with the effects getting more pronounced over time, sometimes gradually and sometimes rapidly depending on the cause.

Many people experience the illness as losing a loved one bit by
bit, with the loved one withdrawing as the people who care about them give up. We associate dementia with parting ways, moving away, leaving for good.

You wouldn’t abandon your loved one, but you may feel as if
your loved one has left you already. You may feel lonely when you lose a connection that you once shared, or a connection you always hoped for. It may feel like it’s too late. This is one way of seeing the situation—but it’s like seeing it with your eyes closed. Or filled with tears.

Eyes are windows to your soul. A pained soul keeps the blinds
down. But if you don’t open your eyes, you won’t let the light in.
You won’t notice that the person you care about is still there, and so is your relationship with them. But the first step is to acknowledge their dementia.

What Often Goes Unseen

We often do not see four essential elements:

First, dementia itself. It is an invisible sort of illness; it does
not reveal itself through bandages, wheelchairs, or walking aids. It starts slowly. It is subtle. It is a different experience for each person it affects. We don’t necessarily know if someone has dementia by looking at them. That’s how invisible dementia is.

Second, the person behind dementia. Because once dementia is diagnosed, it is all too easy to pay more attention to the disease than to the person who has it.

Third, the caregiver behind the person behind dementia.

Fourth, the relationship between those two people. There is still, always, a relationship between a person with dementia and a person who cares for them.

Dementia itself is difficult to spot in the wild. It affects people subtly, even in its advanced stages. But eventually, things start disappearing. Almost imperceptibly, particular skills, words, and knowledge may start to vanish. Even so, which skills a person loses, and to what extent, differs from person to person. This means there is no “standard” form of dementia. However, loss of memory and loss of words are two ways that people commonly recognize dementia.

An average adult knows about thirty thousand words. What difference does it make if someone forgets a couple of hundred of them? It is not immediately obvious—neither to the person who has dementia nor to the people around them. Work by famous authors such as Agatha Christie, Iris Murdoch, and Terry Pratchett showed symptoms of language deterioration before the authors themselves were aware of the disease. Not even their most faithful fans noticed, at the time. The study of these writers’ novels did not take place until after they were diagnosed with dementia, or in some cases even after their deaths.

Time is another subtle clue. Saint Augustine famously stated, “What then is time? If no one asks me, I know what it is. If I wish to explain it to him who asks, I do not know.” No wonder people with dementia get confused about time—time of year, time of day, or time of their life. They aren’t quite sure what year it is. They get day and night mixed up. And like most of us, they feel younger on the inside than they appear on the outside. Unlike the rest of us, they may believe that if they feel twenty, they must be twenty

A person who seems to be losing things more and more often— words, keys, and sometimes their temper—will at some point be taken to the doctor. As they enter, they are treated like a regular
person, though perhaps as a person who’s a little forgetful. They are addressed directly, in first person: Take a seat, Mr. Jones. But after they have been diagnosed, they are discussed in third person, as if they are not there: We are afraid that Mr. Jones is showing signs of Alzheimer’s. Once dementia has been acknowledged, it takes over the show. The diagnosis often marks the transition between not seeing dementia to seeing only dementia.

Why have you started talking about me as if I weren’t in the room? Mr. Jones might ask. This is the moment when a person seems to disappear behind dementia. Like one person I used to know…

More information on Books related to Dementia

NVC Dementia Web Resources

Click here for Marshall Rosenberg Dementia Articles
Click here for Marshall Rosenberg Dementia Videos
Click here for Nonviolent Communication Dementia Articles
Click here for Nonviolent Communication Dementia Videos