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  1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

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. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,408
    Male
    Cornwall
    HI LorraineB "Thanks" I just got to stay positive take one stage at a time its not easy but I’m getting there


    :):)xx
     
  2. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi Everyone, Its a pleasure to get the opportunity to answer any questions around concerns around caring for someone with cancer and dementia
     
  3. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    #23 LorraineB, May 30, 2019
    Last edited: May 30, 2019

    Hi,

    I am so sorry to hear of your Mother’s advanced cancer and that treatment is more around palliation than a curative approach. It sounds like she is currently doing well though with her condition and doesn’t sound too distressed. The most important factor about a palliative approach is ensuring comfort and dignity is maintained and ensuring your mum is living her life pain free and with some quality of life. It is worth observing for changes in her mood or behaviour which may indicate a deterioration or potential pain. Often with dementia the dementia tends to get blamed rather than pain or potential depression.

    I’m afraid as far as I am aware my role is unique to Macmillan, however over the past few years I have been travelling around the country teaching Macmillan Professionals about dementia so hopefully someone in your area may have attended. Hopefully she will be receive good palliative care anyway. Perhaps she may benefit from day care at a local hospice?

    Has your mother been allocated a Macmillan Nurse? If not it may be worth asking to be referred to one. Even if she does not require symptom control at present it will get her in the service for if and when she may require it. As she has been given a rough time span for prognosis I suggest you ask her GP if she can put on the Gold Standard Framework which ensures her care will be discussed monthly and monitored by the GP.

    Other things to consider if you have not done so already are thinking about Advanced Care Plans which will look at meeting her needs and planning for her future care/wishes. This again could be discussed with the GP or Macmillan. It may also be worth considering Lasting Power of Attorney for Finance and Health (if she still has the Mental Capacity to appoint someone to act on her behalf or in her best interest if she loses ability to make decisions due to her dementia).

    I hope this information helps.
     
  4. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    #24 LorraineB, May 30, 2019
    Last edited: May 30, 2019
    Any concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.
     
  5. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi, It sounds like you are feeling quite weary with the situation at present. Caring can be so stressful and it so important for you to have support. Do you have an Admiral Nurse Service available in your area to offer you support? Or it may be worth getting in touch with your local Alzheimer’s Society to see if they can offer you support. Have you had a carers assessment yourself which you are entitled to?

    With regards the person with cancer, have they or yourself been offered a Holistic Needs Assessment which will help look at signposting for anything you or loved one may need support with. Ask at the GP surgery if anyone could come to the home to give the injections instead of going to the clinic, or ask if you can be referred to a Macmillan Nurse that can offer advice on what help may be available with this. I think the chemist may have some responsibility to deliver the injections to the clinic. How often is the person reviewed and is the treatment working? If not, may need a review from the Oncologist.

    I hope this answer helps.
     
  6. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi,

    People with dementia are more at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection. I would also question should a person with moderate to high stage of dementia be having a general anaesthetic, could there be an alternative for example local anaesthetic?

    Hope this answer helps.
     
  7. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Sounds like a sensible plan. Watch and wait can be good practice
     
  8. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi, It can be difficult at times giving and retaining information when someone has dementia. It might be worth asking the Oncologist to explain things to your mother in a simple way, not overloading her with too much information. Explain she needs information given more simplistically if need be. Would he/she drawing diagrams help? Believe it or not people with dementia are usually pretty resilient when explaining and talking to them about their cancer. Be as honest as you can be with her. It is sometimes families that struggle rather than the person themselves as a way of wanting to protect their loved ones. It might help to ask if there is a Clinical Nurse Specialist to go into the appointment with you and then after the Consultation ask them to answer any questions you may have or want clarifying. There are 2 Macmillan/ Dementia UK Booklets available titled Cancer and Dementia which you may find useful which are available from Macmillan information centres or online https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspx

    One is for carers and the other for patients. I hope this answer helps.
     
  9. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi, It’s a difficult question to answer as it all depends on the type of cancer and stage and prognosis of the cancer. Also it would depend on your father’s physical health too. The outcome should really be about your father’s quality of life and how treatment will impact on this. As he only has mild dementia, he may have more options around treatments but again it depends on whether he has any other physical or medical issues which may impact further on his health and put him at risk. General anaesthetic isn’t a great option for people with dementia as it can stay in the system a while and exacerbate the dementia. There is also the risk of developing a delirium (acute confusion) after this which could take a while to resolve and be distressing for the person and their family. People with dementia are 10 times at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection.

    Looking at treatment options should be considered. Could surgery be performed under local anaesthetic? For example, at my Trust we offer this for people having skin cancers removed. Without knowing his cancer it is difficult to determine, could spinal surgery be offered? Radiotherapy perhaps? Chemotherapy although this can cause further issues cognitively and it is important for the person to be able to recognise if they are becoming ill which can be difficult if they may live alone. Infection may develop quickly with chemo. Sometimes doing nothing is an option, watching and waiting. Ask what would happen if we do nothing? Is treatment for curative intent or palliation?

    It is all about weighing up the risks and benefits of treatment – will it make the dementia worse or impact on his quality of life or will it help his quality of life to reduce pain, discomfort etc. Don’t be afraid to ask the Oncologist to explain about ALL the options available including side effects.

    Involve dad in all discussions. Does he have the mental capacity to understand, retain, weigh up risks and benefits and communicate his decision around treatment? If not, will he require a best interests meeting? What would his past wishes have been? Do you have Lasting Power of Attorney for HEALTH? If so you are his voice. There are 2 Macmillan/Dementia UK Booklets available titled Cancer and Dementia which you may find useful which are available from Macmillan information centres or on line https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspx

    One is for carers and the other for patients. I hope this answer helps.
     
  10. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi, that sounds like good and sensible practice and so pleased to see you have the support from Macmillan. The outcome should always be about maintaining quality of life for the person which isn't always active or curative treatment. I wish you and your father well.
     
  11. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi,

    It’s a difficult one to answer as ethically you don’t want your mum to become distressed. I guess for me it’s about keeping things as honest and consistent as possible. When she is getting upset perhaps say something like, “Mum do you remember the discussion about your cancer and how the chemotherapy may affect you, that’s why you are feeling sickly today”. It might work it may not. Perhaps distraction may help if she becomes too upset, talking about something she enjoys or perhaps play some calming music. You may find the chemotherapy may actually make her a little more confused and forgetful. Have you tried writing things down for her that may act as a reminder? I guess with the hair loss this must be devastating for her, perhaps trying to listen to her concerns and giving her the opportunity to voice her anxiety may help rather than trying to avoid it. I guess this area in particular is where empathy is required as just because she has dementia doesn’t mean to say she won’t feel sad in seeing her hair fall out. I hope this answer helps.
     
  12. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi, Trying to get a time of day which is better for him to have the chemo may help as perhaps getting him up too early or later in day if tired may not help with his agitation. Would something like giving him an iPad to watch old comedy sketches/programmes e.g Morecombe and Wise or whatever he enjoyed help? Perhaps music via headphones may help. Making a photo album or a memory box and utilising these may also help or reminiscing about things that made him happy e.g. holidays. I guess the key is about activity really. Does he play dominoes etc. Reassurance and reminding him of what is happening and the time may help particularly if no clock in sight as to him it may seem forever if disorientated. I hope this is helpful.
     
  13. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi,

    This is similar to another question I was asked earlier so I shall aim to give a similar answer. Each person with dementia is individual so therefore treatment options should be individual. Your mother may have dementia but be physically fit and healthy and if so that should be taken into account. If she has dementia but is also physically unwell with other medical issues then that too should be considered. In theory dementia itself should not prevent any treatment but it is about getting the appropriate (if any) treatment and everyone should be assessed in their individual circumstance. At my own Trust many patients have had good outcomes with Oncology treatments where they have also had dementia.

    Treatment will depend on the type of cancer and stage and prognosis of the cancer, as mentioned previously it will also depend on your mother’s physical health too. The outcome should really be about your mum’s quality of life and how treatment will impact on this. General anaesthetic isn’t a great option for people with dementia as it can stay in the system a while and exacerbate the dementia. There is also the risk of developing a delirium (acute confusion) after this which could take a while to resolve and be distressing for the person and their family. People with dementia are 10 times at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection.

    Looking at treatments options should be considered. Considerations like could surgery be performed under local anaesthetic (for example at my Trust we offer this for people having skin cancers removed), without knowing the cancer type it is difficult to determine. Could spinal surgery be offered? Radiotherapy perhaps? Immunotherapy? Chemotherapy although this can cause further issues cognitively and it is important for the person to be able to recognise if they are becoming ill which can be difficult if they perhaps may live alone. Infection may develop quickly with chemo. Sometimes doing nothing is an option, watching and waiting. Ask what would happen if do nothing, is treatment for curative intent or palliation? It is all about weighing up the risks and benefits of treatment – will it make the dementia worse or impact on quality of life or will it help her quality of life to reduce pain, discomfort etc. Don’t be afraid to ask the Oncologist to explain about ALL the options available including side effects.

    Involve mum in all discussions. Does she have the mental capacity to understand, retain, weigh up risks and benefits and communicate her decision around treatment. If not will she require a best interests meeting? What would her past wishes have been? Do you have Lasting Power of Attorney for HEALTH? If so you are her voice. You may find the Cancer and Dementia booklets useful which are available from Macmillan information centres or on line https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspx

    One is for carers and the other for patients.
     
  14. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    Hi, It may help if you try to plan treatment at a time which may be better for him. For example, he may need more time to get ready in the morning and rushing will not help his anxiety. If you mention this to the receptionist/therapists they should be able to help with this. Perhaps aim to make the day a more positive experience than negative, e.g. “You have to go for your cancer treatment again today but how about after we go for a nice cup of tea and a cake later - what do you think?” Sometimes it gets easier for the person when it becomes a little more familiar to them and they get into a routine. Depending on what the treatment is it is may be worth asking if they could have a familiar face to work with them consistently, e.g. the same radiotherapist.

    I am guessing it will be quite tiring for you. Is there someone who could take him one day for his appointment for example a member of family to give you a little break? Don’t be afraid to ask. Trying to get things organised the night before may also help a little, putting clothes out etc for him. Reassure him and remind him what he is going for and why as he may forget and need prompting. He may be anxious about going somewhere outside his comfort zone. Tell him he will be safe and will be coming home after treatment. Identify if there is a trigger that makes him anxious and work with that. For example, he may worry he won’t be able to find the toilet etc so will need reassurance around that. I hope this answer helps.
     
  15. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,408
    Male
    Cornwall
    HI LorraineB I have been in contact with Macmillan cancer care and get regular email updates but whilst I’m holding off the Surgery at moment not much they can help with maybe ;) a different in September after my next CT scan :cool: I also have the Masonic Charitable Foundation primed and ready if needed so I’m on top of the game ;);) hopefully I wont need either :)

    xx
     
  16. molliep

    molliep Researcher

    Aug 16, 2018
    72
    Female
    Leeds
    Thank you @LorraineB for your detailed answers. We will leave this discussion open until 4pm as scheduled in case anyone has any more questions.
     
  17. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    If you are affected by dementia and cancer please read the Macmillan booklet devised by Macmillan and Dementia UK. There are two available one for the person with dementia to read and the other for the carer. It gives advice on cancer treatment options and what to consider, and where to access emotional, practical and financial support (Did you know there is a Macmillan grant available to help with finances for example?). They are available from Macmillan information centres or accessible online. Maggie's Centres are also wonderful places for cancer support if you have one in your area.
     
  18. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    You sound pretty clued up which is great. I wish you all the best in relation to both your conditions.
     
  19. LorraineB

    LorraineB Registered User

    Jan 23, 2019
    44
    Female
    It has been a pleasure and I hope useful to all affected by the two conditions.
     
  20. molliep

    molliep Researcher

    Aug 16, 2018
    72
    Female
    Leeds
    Okay everyone, that brings us to the end of today’s Q&A on dementia and cancer. I hope it was helpful. :)

    We’d really like to hear your feedback on this sub-forum ‘Caring for a person with dementia and cancer’. You can let us know what you think and give any suggestions for improvement by completing the feedback survey (either online or via telephone). You can complete the online survey here. If you’d prefer to complete the survey via telephone, please contact me at m.price@leedsbeckett.ac.uk.

    Thank you very much @LorraineB for kindly giving us your time and expertise.

    Best wishes,
    Mollie
     
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