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misinforming doctors

hilary's daughter

New member
Oct 14, 2018
7
Hi. Wonder if anyone else has experience of someone with dementia regularly supplying doctors with mis-information about their health? We're finding that it leads to lots of unnecessary prescriptions and investigations, which is worrying.

My mum is moving from the mild to moderate level of severity. She goes to doctors a lot - every time she doesn't feel "quite right" (which is often) she makes an appointment. But often the reason she doesn't feel right is not problematic.

For example, she recently flew back to the States from London (she lives in the States) and had jetlag. Understandably, she felt really tired. So she made an appointment with her doctor, and ended up being referred for blood tests and given a host of new medications (she's already taking a lot). My brother (who lives close to her in the States) then had to spend 2 hours explaining to medical professionals that the fatigue was probably related to jetlag. As he works 6 days a week for 10 hours a day, taking out this time to sort these situations is difficult. He's trying to attend more of her medical appointments with her, but again this is hard with his work schedule.

So does anyone else have experience of this sort of situation and what do/did you do?

Thanks
 

karaokePete

Registered User
Jul 23, 2017
5,310
N Ireland
My wife is a bit like that - every pimple is skin cancer sort of thing. The GP is aware of my wife's dementia so is very good with her and will just reassure most of the time. Reassurance is also my initial reaction to any complaint and I only call the GP if the issue either persists or looks serious to me from the outset.

I have started to reassure about the complaint and then ask if anything else is bothering my wife as I have found that the complaint can be a way of vocalizing some other worry that can then be resolved.
 

sarahsea

Registered User
Dec 19, 2017
66
Hi. Wonder if anyone else has experience of someone with dementia regularly supplying doctors with mis-information about their health? We're finding that it leads to lots of unnecessary prescriptions and investigations, which is worrying.

My mum is moving from the mild to moderate level of severity. She goes to doctors a lot - every time she doesn't feel "quite right" (which is often) she makes an appointment. But often the reason she doesn't feel right is not problematic.

For example, she recently flew back to the States from London (she lives in the States) and had jetlag. Understandably, she felt really tired. So she made an appointment with her doctor, and ended up being referred for blood tests and given a host of new medications (she's already taking a lot). My brother (who lives close to her in the States) then had to spend 2 hours explaining to medical professionals that the fatigue was probably related to jetlag. As he works 6 days a week for 10 hours a day, taking out this time to sort these situations is difficult. He's trying to attend more of her medical appointments with her, but again this is hard with his work schedule.

So does anyone else have experience of this sort of situation and what do/did you do?

Thanks
I don't have the answer, but I can certainly sympathise. My husband had hypochondriac tendencies before dementia struck and now that's much worse. He regularly makes doctor's appointments because he feels funny, has a strange pain in his side, back ache, or has sneezed twice. Where possible, I try to reassure him and talk him out of it. Sometimes I suggest waiting till the following day to see if he feels better. I think I must have saved the NHS a lot of money in wasted appointments over the years. He also has ended up having unnecessary tests etc.
I try to go to appointments with him, but sometimes it's just not possible. Last week he went to the GP complaining of back ache after a fall. He had already been to the hospital's minor injuries unit and they suggested pain killers and waiting for it to get better on its own. I don't know what the GP said, but I think he was annoyed with my husband for not taking prescribed beta blockers. The result was that my husband spent the evening taking his pulse and saying that the doctor told him he was about to die. He was also told to return this week "with his wife" and they made an appointment which neither of us can attend. So I had to rearrange it.
The problem seems to be that most doctors don't understand the dementia diagnosis. They don't realise that most of what they say is instantly forgotten.
My husband has Glaucoma and I couldn't go to his last appointment with the consultant. I rang the consultant's secretary, explained that my husband was unlikely to remember what was said and asked if the consultant could either phone me afterwards, or give my husband a note explaining his test results and any action we needed to take. I was told that wasn't possible and that we would get a copy of the letter sent to his GP. That took several days and unfortunately my husband came out of the hospital clutching new eye drops and he didn't know why. He refused to use them for about 3 days. That was 3 days of me talking to him, reassuring him etc etc. An unnecessary 3 days of stress for both of us when a 5 minute phone call from the consultant would have resolved the issue! When we got the letter it said that his eye drops had been changed because he complained that the other ones caused discomfort. He didn't remember saying that of course.

You can probably guess from the above that I'm not impressed with the medical profession's understanding of dementia (apart from the dementia consultants and CPNs of course.) Apologies for rambling on. I think it's worth trying delaying tactics with your PWD, maybe see how she feels the next day etc. I'm thinking that I might ask if my husband can always see the same GP - at the moment he could see anyone. But it's difficult because there's always the chance that their symptoms are real and need attention. Just another aspect of dementia sent to try us!
 

canary

Registered User
Feb 25, 2014
11,706
South coast
Ive had this sort of problem too - OH telling the doctors one thing and then OH telling me something quite different. also OH telling the doctors that I have said something that I havent and then OH telling me that the doctor said something that they didnt.

I have found that the only to prevent this and to make sure that everyone knows what is going on is to attend all appointments with him.
 

Sirena

Registered User
Feb 27, 2018
2,145
I think it's quite common, a person with dementia knows 'something isn't right' and cannot correctly identify whether it's a minor nuisance or a life threatening ailment. It's difficult for the GP because they can't assume it's due to the dementia, they have to investigate in case something is missed. While still living independently my mother had a persistent cough and had investigations for cancer (it was an allergy), and a couple of A&E admissions for heart complaints, the first time it was a panic attack, and the second it was gastric reflux. And those are just the ones I know about!

She has been in a care home since the beginning of the year and still does it to a lesser extent. When she broke her hip she was fairly stoic about it but when she had an episode of heartburn she thought she wouldn't last the day out.