Communication and self-awareness in dementia

 

I don’t know about you, but communication is getting more difficult for me, especially late afternoons through the evenings. Thank God I have mornings (except my primary communication partner isn’t a morning person at all) and thanks for the ability to put thoughts into the written word. And the people here who helped me find my voice.

(To would-be writers: Put pencil to paper, fingers to keys. Everyone has opinions or stories to share – theirs or others. Everyone has a voice. You have possibly found it through talking and working; you will find it by writing as well – as long as you write long enough. A tip. A quick way to find your voice is to simply be honest in your writing.

My lack of communication – what does it do to me? How does it feel? That one’s easy. I’m damn frustrated. It feels like there are snakes in my belly, slithering along, making a rusty sound, breathing hard, expanding and contracting my inner torso.

Except I’m not reacting on the outside, that’s shutting down. Where’s the shouting? Where’s the throwing up of hands, boxing the pillow on the couch? I didn’t run on fright or fright—but freeze.

It shouldn’t have happened this early in my life. And it’s creeping too fast.

I remember my mother-n-law becoming frustrated when she couldn’t think of a word. God love her – she always did the New York Times Sunday crossword puzzle. Then she had conversation trouble, putting words and concepts together into a sentence. We watched her face crinkle as it creased, getting red, hands in fists. No more puzzle.

Then when we had family gatherings, she gave up speech entirely.

I assume this is where I’m headed. I can feel a couple of snakes whooshing as I write this.

I often think, where is my gumption? My giddy-up? My striving for written, sometimes pictured, goals?

My mom, if she had this disease and she had some of the symptoms, chose flight. She used to eat lunch with some of the 13 women she supervised then she began to take 2:00 or 2:30 as her lunch hour. She said she did that to shop. She had been forgetting words a lot by then and I think she was embarrassed. Losing items then not being able to do some household chores came afterwards. She passed away before her symptoms worsened.

 

I’ll delve into self-awareness first. For without that, we can have little discussion. You can’t communicate well without knowing what you think….what you feel….and how you affect other people.

People with MCI, mild cognitive impairment like me, have varying awareness into their cognitive dysfunction which depends on the their attitude, at the time, their surroundings and the time of day.

A person who has mild to moderate self-awareness can compensate by using note pads, alarms on computers, phones and iPads. In communications, speech problems can be substituted for by made-up words or acting out the word or sentence .

Harvard reports,from… the Harvard Aging Brain Study Staff, that “self-awareness is an individual’s capacity to recognize and understand one’s own character, feelings and experiences.” The opposite of that is called anosognosia – which is a lack of awareness that occurs in the late stages of diseases like Alzheimer’s. Research points out that 50–70% of people with mild Alzheimer’s have preserved perception. In vascular it’s more variable and in fronto-temporal dementia, a lessened self-awareness can occur early in the progression.

While the ability to be self-ware drops, emotions like happy, sad, grateful and frustrated are often preserved much longer.

Individual experiences can differ considerably. Self-awareness can fluctuate during the hour, day or week. It also may change because of a person’s mood or their environment.

Scientists don’t yet understand why the cognitive deficits occur, what brain changes they’re linked to or how to halt their progress.

I haven’t seen any of these cognitive disruptions in my own life, unless the recent communications I’ve had in the past few days are representative of them. Ask my wife. I would assume others would have access to observations of them more clearly then the person with MCI or dementia could.

A person unaware of their recollections are less likely to use memory devices like alarms, screen shots or making lists.

I have an alarm set to take my medications and a calendar to remind me of appointments. After it goes off, I schedule the alarm for snooze a couple of times then turn it off because it occurs in the middle of my writing time. I assume I’ll remember – I do about 60% of the time.

I forget to check my calendar totally.

If caregivers aren’t educated about the disease, or trained or taught, they have a difficult time communicating effectively with the patient. They need to learn, in addition to everything else, about their possibilities of them slipping into a state where they don’t know themselves, what they’re all about. Then give a lot of supervision and directions. Don’t be harsh, just use guidance following usual protocol.

Otherwise it’s business as usual. Keep these suggestions in mind.

1.        When behavior becomes oppositional, consider they may be out of control due to a loss of self.

2.        Deal with that problem.

3.        Be careful not to yell.

4.        Don’t punish out of your needs.

5.        Sit down.

6.        Invite them to join you.

7.        Talk about something else.

8.        You can still talk if they insist on standing, or pacing.

9.        If they’re staring into space, they may be lost.

10.  Don’t try to get their attention.

11.  After some time after you notice them, half an hour or so perhaps, you can sit with them and talk softly.

12.  If paranoid, having delusions or hallucinating, treat as usual.

13.  Remember the tried-and-true method of distracting.         

 

“People’s instincts are to correct using logic,” says an online friend friend of mine.“It is really hard to nod along and affirm. But so necessary. I’m still learning.” 

We’re all learning – together. Let’s keep checking each other’s substacks to refresh our own information and learn from each other. Many of the facts are written in caregivers’ articles and essays. Some of us do research. Persist in your exploration. Țhere’s new updates on the dementias continually. Happy digging! 

 

Disclaimer

The intel in this article is for educational and informational purposes only. I am not a  doctor. This article should not be relied upon for medical advice. Please consult qualified professional guidance for advice about your or your loved one’s situation. Any time you or a loved one has an urgent need, call 911 or your country’s emergency number.

Please know, you are not alone.

Till next Monday, or in the chat….

Judi

“Your vision will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakens.”

Carl Jung, psychiatrist and psychoanalyst