April 30, 2020
Yelling, swearing, spitting, hitting, pinching. Accusations, demands, demeaning comments. Refusing help when it's desperately needed. Behaviors associated with dementia can be scary or hurtful. They are often referred to by ugly words.
Aggression - Agitation - paranoia - sundowners - Behavior problems
Sometimes people say it's meanness. But it's not. It's behavioral communication.
Behavioral communication is when information, meaning or messages are conveyed via behavior.
And while it may be true that a behavior can be aggressive – and that it can be a problem – we can't stop the thought there. For if we do we will miss the very best chance we have to alleviate the issue.
Our residents, clients and loved ones with dementia often use their behavior to tell us what they need. It is up to us to receive their message and identify the need.
A simple concept that's not always so simple in the moment.
With this blog I hope to help others decipher some of the messages their residents, clients or loved ones are sending.
I have worked with elders professionally since 1998. Most of those years I specialized in dementia care. I love it!
I love connecting with people with significant dementia. Such a special feeling! I love to see the positive changes when long-unmet needs are finally fulfilled. The change in the person's mood, demeanor and even personality can be astounding.
I have found I love helping care staff, other professionals and residents' family members understand and respond to our people's needs and behaviors.
I will plan to focus this blog mainly on how to understand and respond to non-verbal and behavioral communication in dementia care. I'll likely throw in a few articles, links, posts or resources on related topics, such as activity therapies and self-care.
It's hard to get around speaking in generalities at times, but bear in mind that nothing applies to everyone. Even if something is usually true there will always be exceptions in dementia care.
Every person with dementia is a unique individual; a one-of-a-kind mash-up of a million different variables.
The ideas and suggestions presented here at ABC Dementia are merely tools to throw in the toolbox. They might make a big difference in the right situation, but they won't help at all in the wrong one.
When we understand our people, and when we fulfill their needs as early as possible, there is an astounding difference. We see that difference in their mood, their behavior, their body language, their personality, and their quality of life.
People frequently used to comment on how well the residents of my memory support community fared. I would explain our simple strategy with a smile:
Get them everything they want, right when they want it.
Most people are remarkably happy, relaxed, and "behavior"-free under these circumstances.
Now, this might not always be possible – but it can still be our goal. We can keep trying. We can realize that just because we haven't figured out the solution, or even maybe the problem (need), it doesn't mean there isn't one.
It's NOT that...
...they're just like this.
...it's just the dementia.
...they're just sundowning.
...we've tried everything.
...nothing can be done.
We can tell how close we are getting to figuring it out by observing. Pay attention to their general well being and to their behavioral communication.
Incredibly important to successfully observing and responding to behavioral communication is good self-care: meeting our own needs.
Well, there are lots of reasons.
First and foremost, perhaps, is that research has shown that having an attitude of gratitude has powerful effects on:
...and many other aspects of our lives.
It directly impacts how difficult it is to care for our residents, clients and loved ones.
This is true not only because it's easier to be patient and observant when our own needs are met, but also because people with dementia are affected strongly by emotion.
(How many times did I think that my residents with dementia were "all having a bad day" before realizing that it was really just me? – A million.)
Practicing gratitude on a daily basis can literally make our jobs easier.
Dr. Robert Emmons, PhD has studied the effects of gratitude for many years. He describes how developing gratitude can help us get through the hard times.
The unfortunate truth is that painful feelings are part of the experience of caring about someone with dementia.
For family members, these painful feelings can be excruciatingly
terrible, dramatic and heart-wrenching, even shameful at times.
These feelings cannot be ignored. They must be felt. Processed. Released.
But even in the presence of these difficult feelings there is still room for positive feelings, countless blessings and plenty of things, both little and big, that are worth our gratitude.
There are many ways to cultivate appreciation or gratitude in our daily lives, even in the toughest of times. Different strategies may work better for different people.
Spending a few minutes each day thinking or writing about something to be grateful for can be a big step in this direction. Meditation or maintaining a gratitude journal are two popular practices.
Other suggestions and resources about how to cultivate gratitude can be found at PositivePsychology.com.
Tris Thorp of the Chopra Center describes a useful exercise that we can use right now to help find gratitude in our hardest moments.
Latoya Edwards offers guidance for people of Christian faith about how to be thankful during hard times.
Ann Napoletan shares her story of how Alzheimer’s taught her to become grateful at gratefulness.org, a site dedicated to learning how to develop and practice gratitude.
Imagine you wake up standing in a busy foreign city at a crowded intersection. You have no idea how you got there. Unfamiliar people are bustling about. You don't speak the language or understand the signage. You recognize nothing, nobody. You pull out some red papers from your pocket. Is it garbage? Is it money?
How much anxiety and fear would you feel? What if someone suddenly appeared in front of you, started speaking gibberish and then pulled down your pants?
How would you feel? How would you behave?
Now imagine you are trapped in your body. You have no way to communicate. Your body hurts but you can't move to relieve the pain. Your tongue is dry. Your mouth won't cooperate to ask for a drink.
This is what life often feels like for our residents and loved ones. So sometimes they scream and protect themselves, or take back a little control over their own life for a moment.
Sometimes a "behavior" can help them get just a little relief, a little connection, or a little of what they need. And we can be grateful for that.
Share your thoughts, stories, gratitude, questions and experiences with behavioral communication or dementia on the ABC Dementia Facebook page.