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Making cancer treatment decisions for a family member with dementia

Discussion in 'Caring for a person with dementia and cancer' started by molliep, Mar 7, 2019.

  1. molliep

    molliep Researcher

    Aug 16, 2018
    72
    Female
    Leeds
    Making cancer treatment decisions for a family member with dementia
    Have you had to make difficult decisions about whether or not to pursue cancer treatment with/for a family member with dementia? What factors are important to consider when making the decision? What advice would you give to others?

    Below are some quotes from family carers of people with dementia and cancer who did and didn’t receive treatment for cancer.


    Katy* cares for her mother with vascular dementia and ovarian cancer:
    “So what they’d said to us was because of my mum’s vascular dementia and frequency of TIAs that they could put her to sleep, they could do a biopsy and investigate to find out what stage it was at, but the problem would be bringing her out because of the state her vessels are, she’s likely to have a stroke which could do even more damage. So we had to make a decision at that point as to do we go ahead and do treatment and investigations or is it palliative basically. And because of her quality of life with the dementia, and the state of the blood flow to the head etc. […] and it took an awfully long time and that’s where we really could’ve done with some support because my mum wasn’t able, she didn’t have capacity at this point to tell us what she wanted and obviously you don’t want to sign a death warrant for your mum. It came down to my brother and I, and in the end he wouldn’t make a decision so it came down to me. And we said no. You know, if she had a massive stroke […] it was the anaesthetist that really made my mind up. They know their business, I don’t. And I think the catastrophic injury that that would cause (a stroke) compounded by cancer and dementia, why would you do that to somebody? So we said no. So at that point she was moved to a hospice.


    Karen* carers for her mother with Alzheimer’s Disease and skin cancer:
    “She has for a number of years had recurrent skin cancers. They’re non life-threatening, they are the sort of thing you die with, you don’t die of them. We know that she has quite a lot of these lesions, we know that at least one of them is not malignant, we’ve no idea whether the others are. They look like previous ones she’s had that have been malignant, and I guess the thing that’s challenging in terms of caring for her with the dementia and the cancer is knowing how far to go in terms of chasing up a potentially malignant condition and where that fits in relation to her dementia. And what’s the sensible thing to do? Do we pursue a diagnosis? There’s not much point pursuing a diagnosis if you’re not going to go for treatment, and if we did pursue a diagnosis and treatment, how would she cope with that? The last time she had one removed was about two or three years ago. It took a long time to heal, it took about six months to heal because they take quite a large area of skin around the lesion. She had to have it dressed every day and then twice a week for a long time and she was fine. But I’m not sure that she’d cope now, with that same level of intervention. So that’s probably the biggest issue is deciding when do we pursue it and when do we leave it alone.”


    Richard* carers for his wife with dementia and bowel cancer:
    “We said as we understand it the situation is if you don’t do anything, she’s gonna die. It’s so advanced. If you do, do something, we understand the risks fully. You’ve explained to us she might not withstand the operation. We said we don’t actually think there’s any choice there. I mean if you don’t do anything she’s definitely gonna die. If you operate, she might die. Where’s the decision? Operate. […] We’re very obedient and the doctor said it’s good to have these rounds of chemotherapy so we agreed that it was and went into it with complete enthusiasm. We didn’t have any reservations about doing it.”


    Lisa* cared for her grandma with dementia and breast cancer:
    “And when we got the results, we went back in and the doctor said it’s malignant, and they were concerned about her age. And we thought well we don’t think we can put her through this. They thought it would have more of an impact of her having an operation than it would her dying with it. So it was a mutual agreement with the hospital and us.”



    If you would like to add your own experiences and thoughts to this discussion please feel free to comment below.

    We would love to hear your feedback on the sub-forum 'Caring for a person with dementia and cancer'. Let us know what you think on this survey.​
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,471
    Dads oncologist said that she thought dad would not cope well with chemo and because of his dementia and frailty the gastro doctor would not consider the operation. We took their advice.

    Dad had palliative care only with just a stent to enable him to eat. Good decision as he is still here 10 months later having had a good quality of life.

    We made no decisions at all. We all agreed that we should follow the advice given by the experts.

    I would add that dad's cancer has paled into insignificance compared to the dementia.
     
  3. molliep

    molliep Researcher

    Aug 16, 2018
    72
    Female
    Leeds
    Hi @Duggies-girl

    Thanks for sharing your experience. It's complex and decisions vary depending on the stage of cancer, stage of dementia, the prognosis with and without treatment, frailty, the potential effect of treatment on the person living with dementia and their capacity to cope with such treatment.

    Your Dad's oncologist sounds great, it sounds like the right decision was made for your Dad. It's great to hear he has a good quality of life - that's the most important thing.

    Mollie
     
  4. molliep

    molliep Researcher

    Aug 16, 2018
    72
    Female
    Leeds
    Lorraine Burgess, the first ever Macmillan Dementia Nurse Consultant in the UK gave this advice during her Q&A to a woman concerned about treatment for her relative's breast cancer. It may be helpful for others:

    "A thorough consultant would look at all aspects of whether to treat or not to treat. It is basically about weighing up the risks and benefits. If it is felt it is not the best scenario to treat as the prognosis may be poor then consider why put the relative through all those assessments which may potentially cause more harm than good. Things important to consider are their physical condition (e.g. despite being 93 they may still be relatively strong and healthy). What is their support network? Do they require help or are they independent – How will treatment impact on this? The outcome should be about Quality of Life. Is your relative happy at present and pain free, or have they got more agitated indicating they could be in pain? You need to establish if your relative would stay still for say a biopsy or mammogram, if not it would it put her at risk of harm. Ask the Consultant what the treatment will involve and side effects of any potential treatment. Surgery for example will probably require General Anaesthetic, could it make her memory worse and impact on her social or daily functioning? Plus she would probably be required to be admitted to hospital and taken out of own environment causing more confusion and potential delirium (acute confusion). Would treatment impact on her lifestyle, is she currently independent, would treatment affect this? What would happen if one did nothing, after a discussion with the Consultant, what is thought to be the prognosis?

    You will know your own relative and how they will usually react to situations. Sometimes it pays to be honest and tell the person they have a lump and that it may be a concern of cancer. Cancer is a powerful word which most people understand. Try and ask what they would want, if it was cancer would she want it to be treated or might she just say at 93 I don’t want treatment (this is quite common). Sometimes you have to ask the questions in different ways and at different times as sometimes people are more lucid at certain times than others. Maybe involve a Speech and Language therapist –we often forget their forte is in communication. What would your relative possibly have wanted in the past?"
     
  5. Grable

    Grable Registered User

    May 19, 2015
    165
    When Mum was diagnosed with oesophageal cancer, she still had capacity - although she had also been diagnosed with dementia. This meant that she was able to say that she didn't want to know what stage the cancer was at and that she didn't want anybody else to know that, either. Her dementia got much worse very quickly after that and we were left in an awkward position of not knowing what position we were in.
    When we had a decision to make about treatment, we opted for palliative care - but I have to say, I was very disappointed with what that consisted of and Mum's last year with us was pretty appalling. Had I had all the facts at that time, I think I would have risked an operation - it couldn't have made things worse for her - but refused chemo, which could have made her very sick on top of everything else!
     
  6. Flavelle

    Flavelle Registered User

    Jun 20, 2017
    12
    I care for 2, one with Alzheimer’s and skin cancers & one with vascular dementia, prostate cancer& skin cancer. As Duggies-girl states cancer pales into insignificance compared to the dementia. Personally I find ferrying them in to have either simple ops or injections to tackle the cancers utterly pointless. I have to sort out somebody to be with the other one, then the other one wants to know why their crusty skin cancer isn’t been cut out when their partner’s one (on cartilage) has been. Simple operation envy? Ridiculous...I’d rather take them to more chair based exercise to improve their quality of life. The thing is I question whether some bod (with less to do than me) would report me for being a slacker if I didn’t do the pointless medical appointment dance! The hackle raising thing about it all is the last time I brought one in for a cancerous skin removal op he caught something at the hospital, like a cold and this sent him downhill so he needed antibiotics and lost continence. Yeah: ****!
     
  7. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,471

    Ha ha yes pointless medical appointments. Dad has an appointment with his oncologist next week which has a point (I have some questions for her) then the following week he has an appointment with the stroke clinic because of the stroke he had in January.

    I can already guess what they are going to say, Low fat diet which will be a joke because I have spent the last year feeding dad up on the highest calorie foods I can find including double cream in most things. He needs high calorie food because he lost 3 stone last year due to the cancer, put it all back on then lost another 2 stone this year while in hospital but has regained almost a stone already. I suppose he will be put back on the high dose statins which we stopped a few months ago as his oncologist said that he really doesn't need to be taking all the medication that he was on previously.

    We will go to the appointment but I don't see the point really and it is a lot of hassle.
     
  8. Lawson58

    Lawson58 Registered User

    This thread highlights the very good reasons why we as individuals should be making advanced care directives for ourselves so that our children and other loved ones aren't faced with making those heartbreaking decisions. It is so hard to make good decisions when a loved one is in crisis, thoughts screaming around in our heads and guilt because you will never really know if that decision was the right or wrong one.

    Advanced care directives keep the responsibility in the individual's own hands, relieving others of the turmoil that such a traumatic time will bring.

    There are some good books around that are helpful in thinking about these issues and they helped me in clarifying what I really wanted so worth checking out.

    My husband has had three life threatening and critical episodes in the last few years, not cancer but now he has heart failure as well as AD and as his heart health deteriorates, I know exactly what decisions I will be making. I no longer have doubts about what I will do. This discussion does not need to be restricted to cancer as other illnesses coupled with age are going to present people with similar questions and issues.
     
  9. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    653
    Female
    New South Wales Australia
    It’s an interesting discussion and I’m glad it has one up at this time for me and my OH.

    My OH has had 2 serious skin cancers removed in the past year - and has dark shadows on his lungs and now his oesophagus! When we had the skin cancers out I did not see these other more menacing cancers around the bend-
    The doctor asked him “do you want us to take a closer look at your lungs or will we leave that alone” - We both said - “ leave it alone !! “
    But the oesophagus problem will need some help - and thanks to @Duggies-girl I am keen to see if a stent will help - but not much more. We are managing on endless soup and milkshakes right now.
    I dont want my husband to be frightened - and when he is - his dementia gets worse. I am not afraid of him dying so much as I am afraid of him being so incapacitated by Dementia that he no longer knows who we are, and the small joys he still has like sitting in the sunshine with his pet dog Lucy are taken from him. The book “Being Mortal” really puts a peaceful quality of life about a courageous attempt to extend life.
     
  10. Lawson58

    Lawson58 Registered User

    Another couple of books that might be helpful:

    'Letting Go' by Dr. Charlie Corke published by Scribe 2018

    'A Good Life to the End'. by Prof. Ken Hillman published by Allen & Unwin 2017

    A lot of what is written in both books is for ourselves as individuals but there's a lot of stuff to think about how this relates to the person we care for.
     
  11. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    653
    Female
    New South Wales Australia
    Many thanks @Lawson58 - I could do with plenty of help-
    But for all my ‘good talk “ i was really cross this evening when I saw my husband urinaring on the bathroom floor instead of in the toilet. And raised my voice - very sorry now - he just went into himself.
    Only last night he fell over in the middle of a wet bathroom floor - i thought it was an accident , the wet floor, but now I see it probably wasn’t - hopefully it wont be one a new practice ! The target is forever moving !
    I shall order those book promptly ! MJx
     
  12. LouLou23

    LouLou23 New member

    Mar 12, 2018
    8
    Female
    North Yorkshire
    I first saw this as a forum and thought how awful it would be to have cancer as well as dementia a while back and now, this week, my Mum who was diagnosed with Alzheimer's 3 years ago has now also been diagnosed with lung cancer in her early 80s. So now along with my brother we have to make the decision what to do, treatment or no treatment. At least reading these threads makes me more aware that we aren't the only ones.
    The main thing I'll take from Lorraine Burgess post is Quality of Life. It is very hard but putting mum through treatment she won't understand, just so she can live longer with dementia which will be getting worse? I would rather have the better time with her now while we can, while she is not in pain. At least these are my thought for now.
     
  13. molliep

    molliep Researcher

    Aug 16, 2018
    72
    Female
    Leeds
    I'm so sorry to hear about your mum @LouLou23. I'm glad the threads in this sub-forum have been useful for you. Hopefully this space will help you to find advice and support from others who understand the challenges of this combination of conditions.

    In case you haven't seen it, you can view the full thread of Lorraine's answers and advice here - some of her other posts might be helpful for you. We are also hoping to host another dementia and cancer Q&A soon. You can click this link >watch the forum< so that you will be notified when there are any new posts in this area of Talking Point. :)

    The sub-forum 'Caring for a person with dementia and cancer' is currently being trialled on Talking Point and we are looking for feedback from people who have used the forum. If you'd like to let us know what you think, you can do so by completing this survey.

    Best wishes,
    Mollie
     
  14. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,471
    Hi @LouLou23 I am guessing that you have read my post about dad, well he is still going strongish after a bout of pneumonia followed by a heart attack and a stroke. He is still happy and reasonably well and still eating for England so I am glad that we followed his consultants advice and stuck with the palliative care.

    I can cope with the cancer and the other illnesses but the dementia is a whole different ball game that I could well do without.
     
  15. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    653
    Female
    New South Wales Australia
    Hi @Duggies-girl - glad dads still going - we still haven’t got to see a surgeon - postponed another 5 weeks as the dr is sick !! But your advice gives me good heart. Our general GP agrees too . He talked to us today about the cancer but it’s water off a ducks back with my husband - he just smiled. His eating has happily settled a lot this past 3 days - lots of soup, milkshakes and icecream- a great favourite . I spent years putting him off icecream- now I buy the buckets ! Many thanks and thanks for TP!!
     
  16. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,471
    I remember putting double cream on dads ice cream @Mudgee Joy it worked a treat, now dad has shepherds pie every night and he always thinks it is the first time. Dad has been referred to the hospice now although he still looks and seems well. I think it is just for support to be honest and the nurse who came to see dad was most helpful and I don't feel quiet so alone in this now. Dad's doctor is coming to see him next week to fill in a DNAR as the hospice recommended we have one. It is the right thing I know but he just seems so well at the moment.

    Dad is having a scan next month and I hope they can tell us where he is at the moment, I know it sounds awful but I need some kind of clue as to how long this can go on as I feel I am in the same place I was in last year when he was diagnosed. It just goes on and on with so many ups and downs and it takes a huge toll on the carer emotionally and mentally whereas dad is fine. I am sure that you know what I mean.

    Glad your husband is enjoying the ice cream.
     
  17. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    653
    Female
    New South Wales Australia
    Hi @Duggies-girl - I totally agree - the ups and downs tear us up - I oscillate between planning a celebration and planning a funeral!! Not unusual to have two a week at each end of the spectrum .
    Very happily my man likes soup and often says - this soup is the best !! Wether I made it or bought it - but I pile in lots of good stuff !
    Another 4 weeks to see the surgeon again
    But while he keeps the food down I can keep sane !!
    Our regular doctor mentioned the cancer possibility to him again - but OH was not bothered - flowed over him - I am grateful that dementia has him so unstressed !!MJx
     

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