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Expert Q&A: Dealing with dementia and cancer – Wednesday 30th January, 2.30-3.30pm

Discussion in 'Caring for a person with dementia and cancer' started by molliep, Jan 18, 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 will be having an 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 was appointed as the first ever Dementia Specialist Nurse working with people affected by cancer in 2014. Her 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 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.

    Lorraine will be answering your questions about dementia and cancer on Wednesday 30th January 2.30-3.30pm.

    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. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Just a reminder that the Q&A with the first Macmillan Dementia Nurse, Lorraine Burgess, will be taking place next Wednesday 30th January 2.30-3.30pm.

    If you are caring for someone with both dementia and cancer, don’t miss this great opportunity to ask Lorraine a question. She has a lot of experience of supporting people with dementia and cancer and their families.

    If you would prefer to contact us privately, then please email talkingpoint@alzheimers.org.uk with your question. We can post on your behalf on this thread without disclosing your username or any other personal details. You may even send a private message to Alzheimer's Society with your question and we will post it here on your behalf. All questions will be answered on the day by Lorraine.

    The Q&A topic is broad so please feel free to ask anything relating to having a loved one with both dementia and cancer and Lorraine will do her best to answer your questions on the day. For example, advice on recognising pain and monitoring symptoms; advice on providing physical cancer care (e.g. stoma care); cancer care and treatment decisions; advice on future planning; advice on dealing with your loved one not knowing they have cancer etc.

    Feel free to post on this thread or contact us in confidence by the methods mentioned above.

    Best wishes,
    Mollie
     
  3. Phew

    Phew Registered User

    Feb 10, 2018
    15
    Hello,
    I'm wondering if you can offer any help please. My stepfather is having increasing problems being able to line things up, ie key in the lock of the door is the big issue. Today was particularly bad for him. So much so that I'm not looking into where on earth I saw doors that locked upon being closed, ie no need for a key (how on earth you open them again is beyond me - hopefully not with a key) !
    He's had his eyes tested probably 3x's in the past year and although the people are lovely I don't think it's his eye's I think it's a pathway from eyes to brain etc. is there anything I can do to help that you're aware of please ??? Thank you.
     
  4. Phew

    Phew Registered User

    Feb 10, 2018
    15
    Also, he has a diet quite high in fibre, he eats well, ie meat or fish or eggs or pulses with veggies and or rice and generally soup to start with or fruit to finish with, not many sweets, hardly anything processed, I cook from fresh daily Mon to Fri. He drinks probably 5 cups of something a day and a bottle of beer a night. Some days I manage to get him to drink 6 - 8 but I'm finding he's having a need for laxido more often now, and am considering trailing him having regular sachets. What are your thoughts on diet, is a high fibre diet a bad idea as it means there's then a need for more than the 6 - 8 glasses of fluid a day, or what...... I'd rather amend his diet than increase his laxido as surely the more drugs he takes the more the contra indications could happen ?
    Thank you.....
     
  5. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Hello everyone, my name is Saun. I will be helping Mollie facilitate the discussion. We are honoured to have Lorraine Burgess, a Macmillan Dementia Nurse Consultant as our expert to answer questions on this important topic.

    The next couple of posts are some questions that we have been asked in the past on dealing with dementia and cancer.
     
  6. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    #6 Saun_A, Jan 30, 2019
    Last edited: Jan 30, 2019
    Question 1: My mum has Alzheimer’s and Vascular Dementia and has been put on Letrezole tablets as a precaution following a mastectomy for breast cancer. Her dementia worsened following her operation, so I am wondering if Letrezole may affect her dementia too?
     
  7. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    #7 Saun_A, Jan 30, 2019
    Last edited: Jan 30, 2019
    Question 2: My mum is suspected of having lung cancer. Her previous battles with cancer have always involved invasive surgery, and I am not sure she’d be well enough to cope. I am worried about the effects of chemo and radiotherapy. Mum doesn’t understand or remember 99% of what is said to her in consultations, so where do I stand in terms of ‘consent’ for investigations or treatments which are proposed?
     
  8. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 3: I am asking for advice about how to deal with a lump found in my relative’s breast. She is 93 and frail but mobile. She is confused much of the time but can still speak and understand and converse about the past. I’m worried that she will not be up to mammogram, biopsy etc., let alone surgery or chemotherapy if it turns out to be cancer. We would like her to be as involved as possible in making her wishes known, but how do we ascertain her informed wishes on ‘big’ questions, when she is already being given care without her explicit consent? She often says ‘no’ to offers of food and assistance, but accepts them in the end, so how do we know the difference between a no that is said as a reflex, and a considered settled wish? Also, is there anything which can make getting to hospital appointments easier for someone who doesn’t want to leave her home?
     
  9. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 4: I am a carer for a friend with dementia. She is 88 and has been in a residential home for four years. Recently her physician found a lesion on her right breast. The doctor suspects it’s cancer, but also said those with dementia have a difficult time with mammograms and biopsies. Knowing her reactions to strangers, pain, hospitals and unfamiliar surroundings, I am unsure what to do: treat it as a sore; let it go until there is pain; consider quality of life vs recovery following breast operation? Any advice would be helpful for me.
     
  10. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 5: My friend’s mum has Alzheimer’s and has just been diagnosed with a brain tumour. She is having palliative care only and they have said she will be fast-tracked to a nursing home. The family have been told they will get £750 but will have to pay top up. I thought that as she is now being fast-tracked she should get full CHC funding, I thought CHC was the same as NHS hospital care, not financially assessed and fully inclusive?
     
  11. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 6: My mum has vascular dementia and ovarian cancer. Because of her quality of life with dementia and her frequency of TIAs we decided against any treatment for the cancer, we didn’t want to put her through any intrusive surgery and cause her distress. Her language is virtually nil now and my biggest concern is that the cancer is growing and developing, we have no idea if it’s pressing on anything or if it’s secondary anywhere (and we won’t because we don’t want any intrusive investigations), but she can’t tell us if she’s in any pain. What signs should I be looking out for to recognise if she is in any pain or discomfort?
     
  12. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 7: My husband had bowel cancer and now has a stoma that I manage for him. I am really struggling with it because he doesn’t understand at all anymore what I am doing or why I need to do it. I don’t like to see him upset or confused but I have no choice but to do it. I don’t want to get any carers in because he doesn’t like other people touching him and I don’t want to confuse or upset him even more. Do you have any advice for how I can keep him relaxed and get him to co-operate?
     
  13. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 8: Mum has vascular dementia and has now been diagnosed with terminal lung cancer. They cannot treat the cancer because she is so frail. I’ve found a lot of information for treatment but nothing about end-of-life care for someone with cancer and dementia. I’m worried about what to expect and how I can keep her comfortable. Do you have any advice?
     
  14. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 9: My dad has dementia and has recently been diagnosed with cancer as well. We haven’t told him about the cancer yet and I don’t know how to tell him or how he’d react or if he’d understand even if we did tell him. He’s not in any pain at the moment and I don’t want to frighten or upset him. I don’t know what will be the best thing to do for him. Do you have any advice and or experience on how other people have handled this situation?
     
  15. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 10: I am wondering if you could give me any advice. Mum is 77 and has stage 1 breast cancer, the doctor has suggested hormone therapy (letrozole) or a mastectomy but I am concerned about how a mastectomy would affect my mum mentally and physically, and I’m anxious about her having to have general anaesthetic. I want mum to make a full recovery but I don’t want to put her through an operation if it’s going to give her a poorer quality of life. How does anaesthetic affect dementia? She doesn’t have the capacity anymore to tell me what she wants and I don’t know what to do.
     
  16. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    Question 11 (came in by email): Is it correct to hope that body exercises and be busy with computer in more languages could preserve from dangerous worsening of actual memory loss? I am 86 with cancer. Thanks for answer.
     
  17. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Hello everyone,

    Welcome to today’s Q&A on dementia and cancer. We have Lorraine Burgess here to answer your questions today, who is a Macmillan Dementia Nurse Consultant from the Christie NHS Foundation Trust in Manchester. Welcome Lorraine @LorraineB!
     
  18. Saun_A

    Saun_A Administrator
    Staff Member

    Jul 9, 2016
    1,773
    I will be assisting Mollie to conduct this Q&A. Welcome @LorraineB over to you!
     
  19. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hello everyone. Happy to be here,
     
  20. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    We have a few questions here for you today so if you would like to go through them one by one that would be great, and we’ll see how many we can get through in the hour :)
     
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