Dementia Patients Need an Advocate

11 Comments

A dementia patient can be very deceiving when dealing with doctors or other care providers who are trying to evaluate their mental and physical abilities. It is the responsibility of the caregiver to be one step ahead of the patient, if the provider is to achieve an accurate analysis of the patient’s capabilities.

Charlie is a perfect example of a patient who, either knowingly or unknowingly, misleads the provider when it comes to how much he is capable of. Last week, a VA nurse was attempting to determine whether or not Charlie’s problems had worsened since he was first seen six months earlier. She began by asking him about his ability to perform activities of daily living (ADLs). In response to the question, “Can you dress yourself,” he responded, “Oh, yes!” He was offended that she would even ask such a question. But the truth is, today he came out with a T-shirt, no outer shirt, a miss-buttoned sweater and his pull-on pants on backwards. I had to speak up and tell her the truth about his capabilities in this area.

Her next question was, “Can you use the phone?” Again, Charlie responded in the affirmative. Yes, if I hand him the phone he can speak to whomever is calling. But if he tries to pick up the phone and dial a number, he gets totally confused. I don’t believe he could even successfully reach 911 in case of an emergency. Again, I had to step in and qualify his answer.

The nurse then asked him if he could take a shower without help. Charlie responded with some indignation, “Of course.” However, I have found that he gets very confused over how to turn on the water, how to proceed with washing his hair, and how to safely enter and exit the shower. So, the correct answer to that question was no, he can’t take a shower without help.

The nurse also asked Charlie if he was having any pain, to which he answered no. The truth is, he had been complaining for several days of neck pain and had been taking pain meds and using a heating pad for relief. When I asked him later why he told her no, his answer was that it only hurts if he turns his head. Fortunately, I was available to alert her to his true condition.

Those are just a few examples of the difference between how a patient perceives his/her capabilities and the truth about their limitations. If the providers aren’t given the correct information, they can wrongly determine that the patient does not need or qualify for assistance from the various agencies that are available. It is embarrassing to the patient to have their answers corrected by the caregiver, and may even trigger anger. It would be better if we, as caregivers, could warn the doctor or other provider in advance, of the patient’s limitations and lack of understanding of their capabilities. We should never let a dementia patient see a doctor or other health provider without being accompanied by someone who is familiar with his or her situation. If you are unable to accompany your loved one to an appointment, make sure that you have contacted the doctor about their current health status beforehand and/or secured another caregiver or family member to attend the appointment with them.

Charlie was upset with me for qualifying his answers, but due to his dementia, by the time the nurse left the house, he had forgotten my betrayal. Such is life with a loved one with dementia.

Marlis describes herself as a “Gramma who loves technology and has a lot to say.” She blogs about whatever catches her interest: food, books, family and more. For AgingCare.com, she writes about the issues facing the elderly and her experiences caring for her husband, Charlie, who suffers from dementia.

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11 Comments

I never go to an appointment without my wife. Maybe it's because I accept my limitations and realize I am losing ground a centimeter at a time, but I appreciate my wife correcting when I give incorrect information, and I frequently yield to her because I don't know what to say (she's not here at the moment so this is unedited!)
I totally agree with the comments. I have the same problem with my husband. You can't have an accurate diagnosis with just the dementia patients comments. I even have friends that say "Oh he sounds so good." Unless you live with them and are there most of the time, the whole story doesn't come out.
Tell you what ... there are docs, too, who "blow off" what the accompanying person tells them. Before Ma's most recent (few years ago now!) doctor's appt, I emailed her re things that were occurring. What does she do when Ma's there? Asks her things like, "Who's the president?" "What day of the week is it?" (well, of course she'd memorized when her appt was), & other such insignificant things, then telling me, "Oh, she's FINE! Just fine!" when I'd told her ALL the "stuff" that she chose to ignore ... well, she ended up being "something else," anyway. Now she's gone who-knows-where, but you can't even get Ma to a doctor unless there's something ~~ was her foot/toe that time ~~ that's really hurting. Otherwise, forget it. (89 now)