GP and dementia risk label

My GP has labelled me as at risk of dementia on my medical record without informing me. I know this because I recently had to ask for my health records due to another issue. This label was put on my record straight after my diagnosis of Parkinsons at the age of 48/49 and can only have been put there based on my diagnosis. The fact that they felt the need to write it suggests that there is some significance attached to it but I don’t know what this would be and I’m curious to know what. I’m also curious to know what evidence is needed before the label is applied. I don’t know why it bothers me but it does. One of the biggest predictors of dementia is age. Are all people over a certain age subject to this label too?
Just wondering.

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Hi @Jackson, :wave:t5:

Your curiosity is completely valid and I understand why you’d have concerns upon discovering this information on your record. However, it’s worth bearing in mind that some of the symptoms of dementia are similar to those caused by other health conditions.

For example, side effects from medication, infections, thyroid problems, vitamin deficiencies, stress and depression can cause symptoms similar to dementia. I’d recommend that you speak to your GP about this so that they can clarify why they’ve included this information in your file.

As I’m sure you already know, you can give our helpline service a call for more support on this.

Best wishes,

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Many thanks for replying. This statement was recorded purely based on my diagnosis of Parkinson’s. I suppose I was wondering if this is standard practice for anybody diagnosed with Parkinson’s or if it is just something my GP has done?
I am going to try and ask my GP practice though this will be a challenge in itself! I really don’t wish to talk to the administration/ management team about this but I will never get a GP appointment if I say I want to talk about medical records :face_with_spiral_eyes:. I am already horribly unpopular (hard to believe I know :slight_smile: ) because I asked to see my medical records.

I suppose the word is risk ? Every body is at risk of dementia? People with pd are also at risk ! Of potential ailments , pD tends to make us more anxious then most people about things . Speak to GP to clarity your concerns to put your mind at rest!!! I am sure it is nothing to worry about.

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Hello everyone, not sure if I’m in the right category but just wondered if anyone has been referred to a memory clinic?
I’ve taken my husband aged 71 (who has had PD for at least 7 years) to our GP this morning as I was concerned his cognivity was not too good. He was given a very brief test which included counting back the months of the year, what time it was, counting back from 100 etc and in the middle of these was given a name and address to recall. He didn’t do too well with the counting back but knew what time it was but surprisingly recalled the full name and address. On the basis of his performance the GP is now referring him to a memory clinic for more detailed investigation. As soon as the Dr said this my husband fell silent and was totally unhappy with it. I’ve tried to reason with him that it’s no different than if he had gone with a physical ailment and was then referred to a specialist but he obviously thinks they’ll diagnose dementia. He was sullen on the walk home and I’ve told him that it’s likely most people over 70 without PD to contend with would struggle to get 100% in such a basic test when already stressed and in a medical environment but he wasn’t convinced. I’m obviously very concerned as I know PD can increase the risk of a form of dementia. Not been the best of mornings so any information/advice from anyone else who has experience of this would be greatly appreciated. Thank you. Jean

Personally I would be very annoyed if Dementia was mentioned on my medical records purely because I’ve got Parkinson’s as there is a risk that anything you say will now be taken with a pinch of salt. I would ask for this comment to be removed until such time it is applicable, if ever

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Hi Jean 1 just read your post so just putting your mind at ease When I go for Physio for my PD at my local hospital , the younge nurse every 2 weeks gives me a Memory test. I’m sure, and did ask the nurse, about the test and the nurse said that wilh having PD it;s just a general test that they do,

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Thank you Mary1947, he had the short test at home a few weeks ago and I’m afraid he didn’t do too well. He was very anxious as he said he was feeling he was being tested and judged although the assessor was lovely and reassured him this was not the case. Anyway, we have her coming back on Wednesday to take a more detailed health history and she said he won’t be asked more questions. I know he’ll be very sullen again but it’s obvious he has a problem so hopefully they can prescribe something to keep it at bay for a while. Parkinson’s is such a cruel disease not only robbing people of their physical prowess but also it seems in many cases their cognivity too… Best wishes, Jean

Hi Jackson
I work in health, and notice this on a lot on records,it is when patients have other comorbidities such as heart disease, diabetes, etc,not just Parkinsons disease, some people have a higher risk of dementia with certain illnesses, it doesn’t mean that person will necessarily get it,it is like smoking, people are at risk of getting lung cancer and other smoke related diseases, but not everyone does,its just another risk factor I’m afraid.

Many thanks for your reply, it’s really appreciated.

I will actually talk to my GP about this at some point since it was recorded without me knowing, but with access to GP services being so poor right now, I can’t do this at the moment.

I suppose my confusion/concerns are as follows:

The biggest risk factor for developing dementia as far as I understand it is aging. Everybody who lives for long enough will age (obvious I know🥴) so I have to wonder if this label is applied to everybody over a certain age and if not, why not?

I don’t understand why a record has been made about a condition which I don’t have, may not develop or may not develop for years .

My fear is that the reason for recording such things is to help with justification for rationing of certain health care provisions should such rationing become necessary.

The main focus, as far as I can tell, in terms of treatment and research in relation to Parkinson’s is based on notions of burdensomeness (is that even a word!) It’s not a notion that makes you feel very useful or wanted or trusting of various agencies/organisations☹️.

For anyone worried about a memory clinic appointment, please try to relax! My husband has Parkinsons and I noticed cognitive decline. Two hour assessment in a comfy sitting room at the clinic, with a very kind, patient, reassuring and knowledgeable psychiatrist. One hour with me, as wife and carer present, chatting about my husbands life, work, experiences etc. Psychiatrist had a very good bullshitometer, and noticed that if my husband couldn’t formulate an answer, he replied on the lines of ‘that’s a very interesting question’. Then I was taken off to fill in an assessment of my daily life and caring responsibilities and my feelings. And also to take away any visual clues and support I might give my husband Husband got more targeted memory questions. He was diagnosed with memory problems" and eventually got a fulsome report with lots of helpful info. I believe the report did make it clear that it was dementa, but it was obscured by lots of helpful detail. Husband happily accepted medication to support his existing memory. ( Can’t bring back what’s lost)

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I think it’s worthwhile noting that a large percentage of people with Parkinsons do get Parkinson’s dementia … after 10 years or so of living with Parkinson’s. Parkinson’s Disease Dementia | Memory and Aging Center

I didn’t really realize this but now my husband with Parkinson’s has it. He has meds to cope with the symptoms like the hallicinations. The medical notes refer to cognitive decline rather than PD dementia. When we go to the consultant (we now go once a month to the geriatric consultant), we discuss things like hallicinations, confusion etc. My husband now isn’t totally aware of it- but at some level he is.

I personally don’t think it’s helpful to partners and carers not to be honest about this and the possibility it will happen… it took me completely by surprise when it started happening and I had no idea that he was at risk of this. Now at least everyone is honest and clear about what is happening and I can get support from professionals. Thank goodness we got an LPA last year before it all got so serious.

Now I think in the early years, I wouldn’t have wanted to know and it’s too much to take on for both the person with Parkinson and their partner but I think at the 8 year mark, this should be raised with people and gently talked about.

The upside is that Parkinson’s dementia is not as bad as other forms of dementia and he will still remember who we all are. But he loses track of time, has hallucinations and forgets that he can’t do some things that he used to be able to.

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