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Expert Q&A: Dealing with dementia and cancer – Thursday 30th May, 3-4pm

Discussion in 'Caring for a person with dementia and cancer' started by molliep, May 16, 2019.

  1. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Supporting and caring for a loved one with the complex combination of dementia and cancer can be extremely challenging.

    We are pleased to be having our second expert Q&A on dementia and cancer, hosted by Lorraine Burgess, a Macmillan Dementia Nurse Consultant at the Christie Hospital in Manchester, who supports people affected by both conditions and their families.

    Lorraine’s unique role involves working alongside cancer specialists and nursing staff helping them to understand the needs of those with dementia and co-existing cancer; working in the community with health professionals in complex cases involving cancer and dementia; and supporting people with dementia and cancer and/or their family with one-to-one help as well as post-diagnostic education, advice on future planning and emotional support.

    Lorraine will be answering your questions about dealing with dementia and cancer on Thursday 30th May between 3-4pm.

    If you can’t make it, feel free to post your question on this thread, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask on your behalf.

    We hope to see you here! :)
     
  2. Flavelle

    Flavelle Registered User

    Jun 20, 2017
    36
    There comes a time when the person you knew has been eaten away by dementia and you wonder why you’re going through the motions of getting their cancers cut out. I care for two. One has cancer and dementia, the other Parkinson’s, Alzheimer’s and arthritis. It’s tough looking after both and I manage because of my kid’s support. I didn’t want this for them though. It seems because we made the decision I am now also expected to ensure the chemist has delivered the injections to the clinic (which are used to keep on top of prostrate cancer.) It’s hard enough getting the PWD to the clinic in the first place. I no longer see the point of the treatments.
     
  3. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    #3 molliep, May 28, 2019
    Last edited: May 28, 2019
    Hi everyone,

    Just a reminder that our second Q&A on dementia and cancer with Macmillan Dementia Nurse, Lorraine Burgess, will be taking place on Thursday 30th May between 3-4pm.

    Lorraine was appointed as the first ever Dementia Specialist Nurse working with people affected by cancer in 2014. She won the Nursing Times ‘Nurse of the Year’ in 2014 and was also made a Queen’s Nurse for her commitment to high standards of practice and patient-centred care.

    Thank you for your posts so far, we’ve also received a couple of questions via email. Feel free to ask about anything related to dementia and cancer, e.g. how to talk to your loved one about their cancer diagnosis, treatment or side effects; making treatment decisions; effects of cancer treatment on dementia; keeping your loved one relaxed during long waits/treatment. Lorraine will be answering as many questions as she can during the Q&A.

    If you can't make it, feel free to post your question on this thread, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask on your behalf.


    Hope to see you here on Thursday! :)

    Mollie
     
  4. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    We've had this question come in via email:

    "As my husband suffered not only dementia - moderate to high - but also severe delirium when in hospital procedures - is any examination that requires some intervention, anaesthetic etc worth it? I am beginning to think not, as I personally fall apart with just sundowning - very hard to keep the chin up!"
     
  5. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    #5 Countryboy, May 28, 2019
    Last edited: May 28, 2019
    Hi I have dementia for almost twenty years :):) and since February 2019 been diagnosed with a kidney cancer :eek::eek: and skin cancers o_Oo_O which were removed today :cool::cool:see PDF I'm now concentrating on Kidney ;);) next MRI scan in September :cool: hopefully the cancer hasn't escaped and gone walk about attacking other organs:eek::eek: or it might be curtains for me. :(:(
     

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  6. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    #6 molliep, May 28, 2019
    Last edited: May 28, 2019
    Hi @Countryboy, thank you for your post. Glad all went well with the removal of your skin cancers today. Wishing you the best with your MRI in September. If you’ve got any questions for Lorraine who is a nurse specialising in dementia and cancer, please post them in this thread. :)
     
  7. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Another question that came through:

    "What advice would you give for explaining information given to us in my mother’s oncology appointments to her afterwards? The doctor usually speaks mostly to me which doesn’t advocate my mum’s independence in any way, she struggles to understand and always asks me loads of questions afterwards. I find it hard to explain it to her in a way that she will best understand or that won’t upset her too much. It’s hard to know what is best to say (or not to say) and I just want to keep her happy."
     
  8. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Another question we've had:

    "My father is 86 and has mild dementia and was recently diagnosed with cancer. We are worried about the effects of different treatments on his dementia. If we opt for surgery, what are the potential effects of anaesthetic on his dementia? And are these likely to be temporary or permanent? And can chemo have an impact on a person’s dementia? We don’t want to try and cure one if this might make dad’s dementia worse."
     
  9. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    This is a just one paragraph from My Consultants letter to my GP

    We have reviewed this at Urology MDT meeting and it is not suitable for partial nephrectomy or ablation so his options either lie with CT surveillance or complete nephrectomy. He is completely asymptomatic from this and independent.

    I am aware that if he has a general anaesthetic this could worsen his dementia and give him cognitive impairment for up to 18 months.

    Taking all factors into consideration he would rather keep an eye on things for now. We have agreed to repeat the CT scan in six months’ time and he has requested I see him with his family in the clinic with the result so we can have a further chat about weather it is safe to continue surveillance or weather nephrectomy is required.

    I decided to go for six months surveillance fingers crossed;) hopefully it was the right one :)
     
  10. LouLou23

    LouLou23 Registered User

    Mar 12, 2018
    11
    Female
    North Yorkshire
    Not sure where to go from here..... Mum has recently been diagnosed with terminal lung cancer so no treatment will be given. The consultant has given her 6-12 months. She has had liquid drained from her lung which seems to lessened her cough. Mum is reasonably active and is just managing to look after herself with a carer going in 3 times a day. Should we be contacting yourselves yet or is it too early? And is there Dementia MacMillan Nurses in all areas? as I feel we will need to have someone like yourself to help us cope with the complications of dementia. At the moment I only talk of the cancer until mum mentions it, is this the right thing to do? She hasn't said anything about it for a few weeks but I'm sure she does remember she has it by what else she says.
    Both me and my brother live away from mum so we are distance carers for her which is a added issue.
    What sort of support can a MacMillan Nurse give?
     
  11. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    Hi again remember I told you on Tuesday I had cancers removed from my neck well redressed them this morning so another PDF photo the reason i'm sending is because I'm the Person with dementia ;);) so I do know the procedures and what its like to have both Dementia & Cancer :eek::cool: which is unusual for the patient to be writing on TP anyway my hospital treatmemt was excellent go back to have stiches :rolleyes: out on 7th June all going along nicely :):)

    have a nice day
     

    Attached Files:

  12. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Hi @Countryboy,
    Thank you for sharing your experiences of living with dementia and cancer on this forum. It's great to hear that your hospital treatment went so well. :)
     
  13. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Here we have another question that came through:

    "How do I explain my mum’s side effects of chemotherapy to her? Sometimes she remembers she’s having cancer treatment and accepts the side effects she’s having, other times she forgets she even has cancer and becomes bemused and upset by her side effects (tiredness, vomiting, hair loss). I don’t know whether to keep reminding her and upsetting her more or say it’s something else instead?"
     
  14. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    And another:

    "How can I best keep my Dad relaxed and calm throughout cancer treatment? He can become agitated and distressed throughout the long waits before and the chemo itself. I hate seeing him worried and want to do my best to make him as comfortable as I can."
     
  15. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,637
    Dad is having no treatment for his oesophageal cancer just palliative stents so that he can eat. He has no recollection of having cancer or that he has had stents.

    We followed the advice of dad's oncologist who did not recommend chemo for dad due to his age 89 frail state of health and his dementia. She said that chemo would make dad ill and probably spoil any remaining time he had. I am so glad that we did as dad has had 13 months since diagnosis and is still symptom free and very happy. A good choice in dad's case.

    Dad has been referred to the hospice and we have had a visit from a Macmillan nurse who was very helpful and even arranged for dad's doctor to visit and fill out a DNAR form for him.
     
  16. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    We've had another question come in ahead of today's Q&A:

    "My mum was recently diagnosed with cancer, I’m worried that if we mention her dementia diagnosis in her cancer appointments it might affect her cancer treatment options. How should I mention her dementia and will this have any impact on her options?"
     
  17. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Another question that has come through:

    "My husband has Alzheimer’s and bowel cancer. Getting him to the frequent hospital appointments for his cancer and treatment is a challenge to say the least! Especially when he forgets we are going / why we are going. Do you have any advice on how to make this easier for us both?"
     
  18. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    I wish you well. You certainly sound like you have had a rough time.
     
  19. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,443
    London
    Hi everyone and welcome to our expert Q&A on dealing with dementia and cancer, facilitated by myself and @molliep.

    It's with great pleasure that I hand the discussion over to Lorraine Burgess, a Macmillan Dementia Nurse Consultant, who is here to answer your questions!

    Thank you @LorraineB :)
     
  20. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Welcome @LorraineB, it is a pleasure to have you here answering questions today.
     
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