Do People With Dementia Make You Uneasy?

Dementia is a word for a group of symptoms caused by disorders that affect the brain. It is not a specific disease. People with dementia may not be able to think well enough to do normal activities, such as getting dressed or eating. They may lose their ability to solve problems or control their emotions. Their personalities may change. They may become agitated or see things that are not there.

Memory loss is a common symptom of dementia. However, memory loss by itself does not mean you have dementia. People with dementia have serious problems with two or more brain functions, such as memory and language.  Many different diseases can cause dementia, including Alzheimer’s disease and stroke. “

Source: NIH: National Institute of Neurological Disorders and Stroke

When I first started having clients with dementia, I have to say, I was a bit unnerved by the acting out and sudden changes in personality.  I often felt like the rug was being pulled out from under me.  I couldn’t make any sense of how to navigate the waters of dementia.  It would make me sad to see the confusion in my client’s face and the pain in the family members.  It was even harder when a gentle and kind client would suddenly yell at me or accuse me of something.

The dementia changes actually made me uneasy because I didn’t know how to deal with it.  I kept responding to the person was as if they were just having a bad day.  I thought by  offering rational approaches and conversations, I would have an impact.  It seemed I never could find the right answers to soothe the situation.  My clients would listen intently, agree with what I said, and then unbeknownst to me  forget the conversation.

And I don’t think I am alone, as a medical professional, of being uneasy with people who have dementia.  I have watched many a provider and specialist side step a client’s dementia moments.  I have seen a momentary confusion on a doctor’s face when a client is able to have an engaging conversation and then, suddenly go off into never never land and as suddenly  return to the same conversation.  One time, I had a client discussing with their PCP the benefits of taking a medication when suddenly, the client states that her son sold her car without asking, and she was going to buy a new one.   The car had been sold over ten years ago because she no longer could drive and had moved to assisted living.  I had to hold back a chuckle when the PCP’s face jaw dropped and eyes widened.  I was able to clarify the situation without getting my client anger.

I have learned to note these events but not take them as reality.  I have no problem saying to a client ,in the moment something like, “oh that is too bad,  and what is your favorite car?”  I have found it doesn’t do any good to confront because the current statement is the “momentary truth”, to be changed or forgotten in the very near future.  The key is to make sure, there are safety precautions in place, to avoid “momentary truths” being acted out in reality.  In the case of buying a car, my client can’t figure out how to write a check and her son has taken over all the finances.

Other medical professionals have said to me, you have to tell the truth to a dementia patient.  I say, why, when their truth is constantly changing and not based in reality? I have a colleague who calls these fiblets. For instance, I have a nursing home client who says to me and any doctor,   that she is living in an apartment and has a staff.  Do I need to say no, you are in a nursing home?  I don’t because most likely, they will repeat the statement again, no matter how I answer it.  My goal is to keep the environment calm.

One of the major disconcerting parts of dementia is a person’s seemingly good grasp on reality.  I have watched doctors talk to my dementia patients as if their cognitive functioning is 100%.   Many times,a dementia client will  appear calm and easy to speak with.  The doctors will begin quizzing him/her about their medical situation.  For instance, asking, “are you in pain”, getting the answer, “yes” (whether they are or not) and then the classic question of, “on a scale of 1-10, with one as the lowest and ten as the highest where is your pain? ” Since many dementia patients no longer understand what the numbers represent, the answer is usually a number that they remember.  It really doesn’t get the information needed.

I have tried to intercede with some doctors by stating, one of the following; you need to ask me health information or the healthcare proxy is invoked.  I also try to get the doctors to not make statements like, “this will hurt a little” because that can be upsetting.  I was lucky to experience a doctor who’s mother was in a locked dementia unit.   He was so knowledgeable, compassionate and understanding of the world of dementia, that he was able to do procedure on a client over the constant cries of “it hurts, it hurt”( a given response even with an analgesic).  He just kept talking to my client about benign stuff and never skipped a beat.

I am very protective of my dementia clients when I take them to a medical or dental office.  I feel I have to guide the doctor through the maze of dementia and how not to be rattled.  I guess my advice to medical professionals is don’t try to treat dementia patients as if nothing is wrong.  There is something wrong.  The brain is not working properly, it isn’t going to and no matter what you say, it will properly be forgotten very soon.  Don’t ignore the person, but speak to the accompanying person for information and to give results.

I don’t get as rattled or unsettled with my clients now.  There are days when I least expect an outburst that get sme each time.  I guess I have learned to make sure my clients are safe and the families are supported.