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How do I deal with doctors constantly using the word dementia?

When I take dad to the geriatrician or neurologist I don't want to hear them say the word dementia. I want him treated with respect and I usually write notes for the doctor ahead of time. My husband says I am being unrealistic and too sensitive.
Status: Open    Feb 22, 2016 - 09:10 PM

Dementia, Senior Health & Nutrition

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3 answers


Feb 26, 2016 - 03:33 PM

Would you feel the same way if it were cancer, diabeties, COPD, or any other problem?
Your Dad should be informed of his condition and be a participant in his care.
If he does have dementia then he is aware of the decline in his mental ability. This can be frustrating but if he is told why he is having problems then he might feel better about it. That this, in most cases, is nothing that he could have prevented and he does not have to be ashamed or angry.
As for being unrealistic or sensitive you are in what I call a "protective mode" Just like with your kids you don't want them hurt so you would do anything in your power to protect them. You can protect your Dad from some things but I found that education is a far better approach to take. When people made comments about my husband.."is he in pain?, why is he making those noises?, mommy why is that man sad?" I would reply.... "He has Alzheimer's and..."he is not in pain, he makes noises like that as a way to comfort himself....He is not sad is brain does not work as well as it should so he cries sometimes....I would always get thanked for informing people or I would get into conversations and get and give ideas and suggestions how to deal with particular situations. And I always have the phone number of my support group because there would be someone that would say they could use help.
So protective you are and a loving daughter you are..but if possible let your Dad help in his care as much as he can.
When you think he can no longer comprehend what is said still talk to him and inform him as if he can still understand. Ya never know.....

Mar 12, 2016 - 05:38 AM

When my mom was in the earlier stages of her progression, the word Alzheimer's would make her agitated and tearful. We talked to her doctor and asked him to not use the word. We would say "her memory problem" or dementia. These ways of saying it just didn't hae the same impact with her. Now that she is further along, we use the "A" word and she doesn't react.

Language is important. If you notice your father is reacting negatively to a word or phrase, change it out!

Mar 13, 2016 - 07:32 AM

Hmmmm...I just read the first response. I suppose in most cases that would be true. However, dementia affects people in as many different ways as there are people affected by this disease. You don’t mention in your question how your father responds to hearing the word dementia used by his doctors. During the first year my father was diagnosed with Alzheimer's, when he was still able to talk and walk, there was no doubt how he felt about his diagnoses. When they used the word Alzheimer's, he became very angry, told them they didn't know what they were talking about, got up and walked out. At first I thought he was just in major denial and didn’t blame him a bit. But as time went on, I began to see a correlation between this belief that nothing was wrong with him and the new reality we were finding ourselves in. It took a couple more years of endless nights reading through articles on the internet before I discovered there is actually a disorder that causes people to believe they do not have dementia or anything wrong with them at all. It is called Anosognosia and it is not uncommon in Alzheimer’s patients. Six years have gone by now, and my father is in hospice for Alzheimer's. I still don't mention the word dementia or Alzheimer's in front of him as it only serves to anger him even at this late stage. The medical profession is making some changes in how they address this issue. It used to be accepted protocol to kind of force the issue that the patient accept the diagnoses of dementia and be a part of their treatment. Now I am reading articles that suggest this is not the only way. I believe each case is different, even though there are commonalities. As a caregiver and advocate for my father, I am learning to trust my instincts. Maybe you are not being unrealistic or over sensitive. Perhaps you are sensing something your Dad can't clearly communicate. That's the gift that family brings to the table. The familiarity forged by years of learning a loved one's moral structure, temperament, and personal preferences, does wonders to fill in the gaps when reasoning and communication become compromised. Trust your instincts. Maybe you’re hearing something he cannot say.

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