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social, health, political imagery through the lens of George J Huba PhD © 2012-2019

Posts tagged dementia care

Last week (June 14, 2017) I received an email from a close friend with a link to an article generated by the North Carolina station of the National Public Radio a month ago. Along with noting that the research process was not what it once was — specifically that I had received a description of a study carried out in India from a psychologist in Israel with a summary of a radio broadcast generated about five miles from my home.

The changes in how we think, process and access information, and communicate change dramatically annually (as well as monthly, weekly, daily even). But is everyone changing how they fit to match our modern world and its information use possibilities?

People of many different income, education, social, and other strata within Indian society took EEGs to study their alpha brain patterns. There were many differences between the way that their brains seemed to work as measured by EEG indicators that could potentially be explained by differences in exposure to different levels and kinds of technologies.

A summary of the work appears here and was written by the University of California, Berkeley, philosopher Alva Noe. Noe discusses how brain wave patterns may have changed as individuals are exposed to the dramatic new information access and processing annually. The original scientific research by Dhanya Parameshwaran and Tara C. Thiagarajan appears here. Noe notes that one of the “problems” in our current conceptions of neurocognitive science is that virtually all of the experimental results have been derived from “WEIRD” brains, that is individuals educated in current technologies within western, industrialized, rich democracies. The Indian results suggest that there are different patterns of “NORMAL” brain waves among individual from other backgrounds.

I find Noe’s ideas to be quite compelling.

Click to open the mind model (aka mind map).

There are many kinds of dementia, but in many types, one huge change is that you lose partially or fully the ability control your facial expression, body posture, and other physical movements that indicate to another person how you feel, how attentive you are, sudden joy, fear, and especially empathy.

Since my diagnosis of FTD (and several years before that), I have heard statements like these from strangers, friends, and family members. Many people think I am angry, disinterested, or not listening to them.

“You never smile.”

“We’re waiting for you not to frown so we can take the selfie.”

“You don’t care what I think, all you do is look at me with a smirk on your face.”

Well, most of the time I am happy and/or neutral although I am sometimes depressed to varying degrees. I am usually interested in what most people are saying. Sometimes I have to break into conversations multiple times to say that I am confused. That confusion is, for me, more likely to indicate that I cannot decode your words because I am losing language skills, not because I was not paying attention to you. I slouch a lot, I often walk looking directly down because I easily trip over over cracks in the pavement and that sometimes leads to falls (I am currently typing using my left thumb on the spacebar because I broke my right thumb in a fall a month ago).

You cannot judge how I am feeling physically or mentally by looking at me unless you are part of my core family and see me very often and sometimes not even then.

That sucks.

Much of how we feel about people is based on their nonverbal gestures and facial expressions. Somebody like me who can barely smile gives people the impression they don’t like what is being said or are annoyed or distracted.

Most people infer negative things from my posture and face and staring that are simply not true.

This is probably a huge factor in how miscommunications often occur among persons with dementia and those they interact with. Even people who interact with me regularly and know my medical problems often misinterpret me.

The following mind model shows some issues in communicating with persons with dementia and possibly misinterpreting what they are thinking and feeling because they look at you with unintended disinterest, never smile, and look distracted. People have often misinterpreted my attempt to smile as smirking.

And if you are a person with dementia, look at yourself in the mirror or in recent photographs and see if you can make some improvements in facial expressions and posture. And if not, when you talking to people, especially friends and family, remind them that you not in complete control of your facial expressions and that sometimes when you think you are smiling or even grinning, the other person just sees a blank face. You can also make a joke out of the situation.

Click on the mind model image below to expand it.

Have a good day.

A phrase you have heard thousands of times (especially if you have lived in California as I did for 30 years). If you have dementia you may groan or the statement may make you angry or you might make a pointed comment back.

Chill, Dudes and Dudettes.

OK, I get it (well actually have gotten it for a number of years since diagnosis). There may not be a 100% good day for you anymore if you have dementia. But how about a perfect (or even good) 20 minutes having coffee with a friend or an hour solving a puzzle with a grandchild or 100 minutes watching Guardians of the Galaxy 2 complete with a refillable tub of popcorn. Yup, these periods of a good day may be followed by a period of frustration or not being able to remember something or difficulty doing a task of daily living.

Use the Force, Luke.

Good moments can be great moments if you let them be. They may last only for few minutes or an afternoon, but given that your brain is “sick” they are a huge gift and blessing. Focus on what is happening to you now, try to not let the bad upset you unduly, and try to enjoy every moment for every second possible.

You may master the Force. You may feel better. Is there a better use of your time?

Focus on what is, not what was.

Click the image of the mind model (mind map) to expand it.

ObamaCare revised/enhanced?

Trump/RyanCare another draft not submitted to Congress?

Within the extant and mythical healthcare plans, additional dementia care services need to be included. Most are cost-neutral or may actually save money while providing better patient outcomes.

Case Management makes existing healthcare services (doctor visits, medications, emergency care) work better. At a very small cost that should actually SAVE money, case management can provide better total patient care, cut unnecessary emergency room visits, and achieve better medication outcomes. What isn’t there to like?

Dementia Caregivers are most often UNPAID, female family members forced to juggle their own jobs/finances, families, and general lives to care for a loved one. Support is required for Dementia Caregivers in the forms of training, support, advice, and FINANCIAL COMPENSATION for their services. They do the work, they should get paid for their time. An upgraded system of paid family caregivers should make DementiaCare more effective and reduce other costs in the healthcare system to such a degree that it will be cost-neutral. An unnecessary hospital stay or emergency room visit can cost as much as $10,000 — $20,000. A family caregiver could be paid for 500 hours at $20 per hour for $10,000. Train family caregivers, pay them, and you have a cost neutral system. What isn’t there to like?

Mental Health issues often lead to huge patient distress, anxiety, and medical management problems. They can frustrate caregivers and lead to nonadherence to medication recommendations. Therapy and counseling can help patients and caregivers as well as cutting overall medical costs. What isn’t there to like?

Group Adult Daycare can provide needed respite for family caregivers as well as important social and recreational experiences for patients, thus enhancing their lives and to some degree ability to function independently. What isn’t there to like?

The following mind model provides some details. Click the image to expand it.