Hi,
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.
J🙄
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Hi @Jackson, 
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,
Reah
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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 
. I am already horribly unpopular (hard to believe I know 
) because I asked to see my medical records.
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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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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I have started to notice an increasing deterioration in my cognitive abilities. I am forever forgetting what I got up for and forgetting what I am doing mid-task, as well as forgetting what I am saying mid-sentence. I have also noticed finding it more difficult to absorb new information, especially if complicated. I am finding myself forgetting the names of people I have known for years, though I will remember later. Worryingly, I have sometimes forgotten to switch the cooker ring off and only the smoke alarm going off has alerted me to the problem. This has only become a thing in recent months and I suspect PD to be a factor.
Hi srb7677 WELCOME TO OUR SITE
Do you have a PD nurse or do you go for physio ?? If you attend to any these appointments ask the Nurse or Physio if they could do a memory test. If you don’t see either then first stop is your GPs surgery, speak to the reception or the nurse. It’s nothing to feel bad about, I make a pot of tea and instead of putting it on the work surface I put it in the fridge,
I have a PD nurse and am waiting for a home visit though my annual assessment by the neurologist is due imminently as well,
It is far easier to see either of these than it is to see a GP, which probably says a lot about why so many patients are overwhelming hospitals.
Further to my original post of May 9 with reassurances that memory testing is carried out as sympathetically as possible, I must report the consequences. September 2023 diagnosis of mild cognitive decline, followed by dementia nurse quarterly visits to check and optimise the Rivastigmine dosage. 12mg maximum daily dose achieved Spring 2024. Signed off. There are NO hospital checkups in England ( like there are for his Parkinsons and diabetes type 1) Rivastigmine is supposed to help preserve memory. Not at all in our case. Deterioration has been frighteningly rapid and we can’t cope. NHS forced him into a nursing home June 2024. Nursing home also out of their depth, 3 complex conditions have resulted in medical, dietary and safeguarding breach issues being raised. He is just totally confused, cannot read, write, or understand the TV. Conversation now impossible. His comprehension is almost gone. Responds either Yes or No or not at all, or the response is not relevant or descends into gobbledegook. Worse still, Social Services departments will not liaise with each other or keep the next of kin informed, only asking for money and accessing financial and pension information of next of kin without authority and illegally. NHS, Social Services admin staff and nursing home staff will lie, mislead and obfuscate and shift blame to family and patient to explain away the misdeeds you find out. So dreadfully secretive it’s like 1984 or Animal Farm or a one party state. Needed a psychiatrist, an assessor and now an independent advocate just to pursue Deprivation of Liberty Safeguards legislation.
so husband cannot leave nursing home by law. I cannot be allowed to be party to any of the interviews, reports or follow up to come. There are about 10 Social services staff involved so far and they are undermining my freedoms, rights and obligations as former sole carer (until June), wife and next of kin and joint house owner. I have to stay in a house we were hoping to sell in retirement as if I sell, Social services will take half to pay for care. We have to hand over half our savings and all of his pension. If you’ve been warned of dementia risk and we were not (Parkinsons diagnosis 2021). Get Health and Fincial Powers of Attorney and Wills and separate bank accounts in place pronto! Any spare cash should be invested in the unaffected person’s name.
Only a year from dementia diagnosis in September 2023. In September 2024, I am not a wife, widow, single or divorced and Social Services control every aspect of both our lives. Only when my much loved husband is dead will we have the peace and freedom we crave and deserve. Hopefully the rapid decline means that won’t be long. He’s only just 68, I’m just 65. Luckily his social worker has her own mind and opinions, sees her job as supporting us both, and not necessarily bending to Social Services departmental whips and diktats. Do not ignore Any warning of dementia. Act now to keep some control
Alisongs thanks for your post you have given all of us some thing to think about , When I was told that I had PD March 2010 my hubby and I used to do lots of things eg Bowls /Dance / holidays with over 50s club ect. Things did not change much at first. then on visiting our friend who we played bowls with. We had a natter (hubby and myself) this friend lived in a Housing Association Bungalow 2 beds with independent living, You had a manager who you could call if needed also we had Anchor call who we could call which in the middle of the night if you needed help. Well we thought about it, put our name on the list, then put our house up for sale, the house sold quick, name, came up on the list , and we moved into our new home. Money from the house
, gave our 2 boys their inheritance. We made sure that we had enough money left to do what we wanted while still able. We had always wanted to travel so we had luxury travel and went around the world, then back to the UK for a few months, then took off again this time booked all via internet, we did have a few scrapes but we also had a great time, now still got small amount of money but we enjoyed life, I am now 77 and I have kept my PD controlled but In the last 6 months it is now showing me who is the boss, I have never regretted what we did, at the time the boys needed help as both were buying houses so the money helped them. We have some gardner’s / window cleaners/ free parking/ repairs when needed/ smoke tests/ every thing comes out our rent, So!!! with health failing and now getting on in years its worth thinking about doing what we did? You can have your house paid for but you can’t take a brick down to your local supermarket to pay for your food. Never Ever Have me and my Husband Regretted selling Up . plus we also have put money on one side for grand children.