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.
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.