Research into cancer patients with dementia

Had a great meeting with Delia Muir  last Thursday at the Clinical Trials Research Unit in Leeds University. Delia contacted me after reading my blog about my experience as a patient In hospital recently. Her

She is based behind Fairburn house in Leeds, which I know well from all my collaboration with Fiona O’Neil.

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She’d asked me there to ask what I thought about a project they were considering and whether I thought it was worthwhile. It centres around peoples experience when they have cancer but also dementia. How decisions are made around their care- there are so many decisions to make when you have cancer and are the issues around dementia considered by clinicians at the moment.
Interestingly they approached a breast cancer specialist and asked how many of her patients also have dementia……she responded by saying ‘none’. She then went away and looked through her patients records which revealed the total opposite and in fact she was treating lots of people with dementia. She just hadn’t considered it to be the case so hadn’t addressed it. This is hugely concerning. It had never occurred to me that this may be the case. But if you think back to when I was in hospital – a nurse, a doctor and an anaesthetist all asked me the same questions and never considered the issue that my dementia may prevent me from answering correctly……so the prospect of having cancer as well and it not being considered are multiplied.

Delia asked me what I thought might be the challenges.
Many issues sprang to mind:

  • People with dementia may change their minds, forgetting they’ve agreed to treatment the previous visit.
  • If someone with dementia is having treatment for cancer how do you go about explaining the weekly treatment when they may have forgotten they were there before.
    Must be like the first time each time for many. But we need clinicians to be aware of this.
  • Would they remember they had cancer? So would that news be first time news each visit?
  • Would people who accompany them necessarily know their medical history (goes back to my experience)?
  • Not everyone talks about having dementia so would they ensure the clinician was aware
  • Why isn’t the fact we have dementia on our notes?

We spoke of many other issues but my fingers kept stopping typing to talk!

I imagine there are many thousands of people in this same situation. It doesn’t just affect cancer patients. People with dementia rarely just have dementia – they have other medical conditions. This must happen all the time……..

The second part of the discussion was around ethics and how to actively gain collaboration with people with dementia,and their loved ones if necessary,  to enable them to carry out the project. Getting through the ethics committee around access to data will be an interesting activity for them!
The question of how you would go about identifying patients with dementia who also had cancer is complex. Firstly, to approach clinicians – but as we saw from above,are clinicians aware their patients also have dementia? Have patients willingly identified that they have dementia.. I highlighted that some families of people in the late stages have taken the decision not to tell their loved one they have dementia so in this case even the patient wouldn’t know.Is it ethically ok to look at correspondence between clinician and Gp?

With regards to contacting people – I never think letter works as well as face to face engagement. I suggested they engage with local DEEP groups as one option when they need to run things by people with dementia – e.g. have they got the wording right; are they using the right language when trying to engage people; are they asking the right questions…..There’s also many carers groups they could approach in the area.
They’re also going to set up a twitter account and use that medium to engage in the early stages – yeh!

Their aim is to identify the needs and come up with a toolkit or ‘handbook’ for clinicians once. Minefield! But something that needs addressing
They’re at the early stages – putting together a proposal. So Lots to think about but what a worthwhile study – really do hope they get the funding.

Delia Muir
Delia Muir

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

2 thoughts on “Research into cancer patients with dementia

  1. My experience is similar, when we visit hospital I have to tell the clinicians and other staff that my husband has dementia as they don’t seem to pick this up from his notes. I don’t know whether it simply isn’t in his notes, or they don’t have time to read them fully, or whether not all staff have access to them. It can be very frustrating, and I don’t feel I can always trust the medical professional in front of me to know that my husband has dementia, or even if they do, to behave appropriately. There’s a tendency, once they are made aware, to raise their voice when speaking to him, to speak to him like a child, or to speak to him through me. I would think that it might be possible to interrogate the Join Dementia Research database to find possible research subjects who have both cancer and dementia. I’m pretty sure it asks about other conditions when you sign up.

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